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The Eighth Amendment: How it affects People with Chronic Illnesses Part II

The Eighth Amendment affects people who have the ability to become pregnant In Ireland.

The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.

Last week we discussed how the Eighth Amendment affected women during pregnancy and birth. This week we are going to explore how the Eighth affects people who are sick and have the ability to become pregnant.

Fellow blogger, Cripple, Baby! has kindly allowed me to share her story. Catherine like me, has Ehlers Danlos Syndrome.

How the Eighth Amendment could have affected Catherine with Cancer:

For me, the Eighth Amendment brings to mind of when I was diagnosed with cancer, back in 2013.

No I was not pregnant, no I was not planning to become pregnant, and no I was not planning on having an abortion. Yet the tone was set for many a discussion around such subjects, the very minute I was diagnosed.

One might assume this conversation would take the form of discussing options for egg preservation, in case of future fertility problems. Although this was never mentioned really, only glossed over. A simple “I’m sure you’ll be ok” was all that was given in this respect.

My period was a good sign

Something I realised was vastly different from the experiences of UK cancer patients, through discussions on support forums. I can only assume such options aren’t granted free by the HSE, and perhaps some doctors just see it all as a bit “icky”? I really have no idea. In fairness, I never pushed the issue. The only guidance I was given with that side of things was the nurse whispering to me during chemotherapy inquiring about my periods, stating that a regular flow was a good sign at least.

No, this was not the route of the pregnancy conversation. The one and only topic was around what would happen if I became pregnant during my treatment.

Of course I was advised to use all the contraception possible, to not purposely become pregnant during this time obviously, that would be insane. But as we all know, even with all the contraption in the world shit happens.

In this scenario the woman has two choices (in other countries) continue the pregnancy, reduce your treatment (or not, but it would be advised) or plan a termination, in order to give yourself the best chance of survival. Neither option is easy. Yet women make these choices for themselves, all around the world, every single day. And we trust they know what is best for them. Neither case in this regard deserves judgement, they are and should be, case-by-case decisions made by the women themselves and fully supported by both medical staff and loved ones.

The hypothetical foetus

So when I was diagnosed with Hodgkin’s lymphoma in 2013, I was quickly informed of what would happen if I became pregnant. They would reduce the treatment in order to give the foetus the best chance of survival. At first this seems like just good advice, a reassurance that if needs be they will do what they can to help me. I am a young woman of child-bearing age, so it’s all relevant. But this mantra was repeated again and again during my treatment, by various medical care professionals. Many a conversation about saving the life of my hypothetical foetus. To get the point across that in this scenario, in this country, I would have no choice.

It’s something I’ve looked back on often. Sometimes with amusement, but mostly with dismay. It just makes me feel very uneasy. My life is more important than a hypothetical, or real, foetus. The life of a fully grown adult is not equal to that of a zygote. Before we even bring choice into it, that’s simply the case.

As heartbreaking as that can seem in situations where a pregnancy is not viable, or comes with a hefty price. This statement excludes cases of late-term “abortions” due to fatal fetal abnormalities, as we all know that late-term “abortions” are simply not done for the craic (in any country) and any further explanation on that would frankly be stupid and I hope unnecessary. When a matured, wanted foetus is dying in its mother’s womb, it’s horrendous for the parents. It’s not something to be mocked, or mislabeled. And it certainly isn’t something Irish parents should have to deal with, alone, in a different country. A financial burden on top of saying goodbye to their child in peace.

Shit happens

Luckily I finished my treatments without any accidents. But shit does happen. It happens to Irish women each and every day. So I have to put myself in their shoes. What would I have done? Could I have been able to access medical support after coming home from England? Would I financially be able to even afford a termination? Is it possible that I would I be held by the state if I informed my doctors of my wishes? Would I even feel comfortable telling loved ones? Looking at such a broad issue, simply in my own terms, my own real experiences, just  does not cut it. And it shouldn’t cut it for anyone.

To truly look at this Eighth amendment and the restrictions it poses on Irish women rationally, we must not only look at it from how our own lives have gone to date. We must ask ourselves, “what if…?”. This is only one, small scenario that I can place myself in, even though it did not happen to me. Even though (under normal circumstances) I really don’t think I would ever choose an abortion in my life time. There are so many scenarios; so many stories that are not our own.

Abortion isn’t always an easy option but many have no regrets and know it’s the right choice for them; for all sorts of reasons that are none of our business. Many also have no choice.

No one can 100%, truly say “I will never terminate a pregnancy”, even when it seems completely unthinkable in our current lives shit happens.

Criminalising abortion doesn't stop abortion. The Eighth Amendment bans SAFE abortion. Click To Tweet

How the Eighth Amendment could affect Laura with Psoriasis:

I have psoriasis. I’ve had it since I was nine, I’m 30 now. It had peaks and troughs but since being an adult it has more or less stayed the same. It’s not just flaky skin that’s itchy. It’s unsightly red blotches all over. The Psoriasis is on my face, breasts and bottom. No where is safe.

It has affected my self-esteem greatly and at times my physical health when it cracks and bleeds. When I was 15 it was so bad on my arms that I couldn’t raise them further than my chest and my mother had to dress me. That was pretty humiliating.

I’ve been called several names because of it ‘scabby’ being the most popular and nothing makes me retreat to being a child who wants their mother, than an adult who stares.
I’ve had several treatments and have tried many diets and none have worked for an extended period of time. The most relief I had with these treatments was three months.

Hope for relief

So, this year I was informed I was a suitable candidate for a series of injections. These are relatively new. The injections work by changing how your immune system produces skin cells. Psoriasis is an overproduction of skin cells.

One of the main side effects is that my immune system will be lower than the average person. I will be more likely to get a cold/flu and it viruses and illnesses will be harder to shift.

The biggest warning I got was not to get pregnant. I probably wouldn’t carry full term and if I did, we both would have lasting damage. I’m a married woman and perform my ‘wifely duties’ as a certain religious organisation calls it. We use two types of protection but nothing is 100% safe.

This is why the Eighth Amendment needs to be repealed. If I were to get pregnant it could be very detrimental to my health and the foetus. I also know, from having relatives with these conditions, that I couldn’t care for a special needs baby, while ill myself. It would be a likely scenario if I were to have a baby.

Potential pregnancy

My injections are life long, so I can’t get pregnant at all. My health is more important than a foetus. I have a husband and family and friends.

If I were to get pregnant, I would be devastated, particularly as I use two methods of contraception. I would have to arrange an abortion and that would be very upsetting.

Nobody likes having to get an abortion but I firmly believe my health and well-being are more important.

I also suffer with my mental health and to be honest, I’d be afraid that pregnancy would make it worse, due to the impact it would have on my life. My physical and mental health would be put on a back burner if I were to get pregnant under the Eighth Amendment.

I know I would be pressured to put the foetus’ health and needs before my own, even before it’s born. Sometimes I struggle to care for myself, never mind a helpless baby.

People have asked me if I can come off my medication to have children. The truth is, I don’t want to. It may be selfish but I want a quality of life for myself and not having children is a side effect of that. I did initially grieve before starting treatment but now I am fine with that decision. A door has closed but a new one has opened and so far, I haven’t looked back.

No woman has an abortion for fun. —Elizabeth Joan Smith Click To Tweet

How the Eighth Amendment could affect me:

During my last pregnancy, I was in a wheelchair from the first trimester until my daughter was three-month old. Having EDS, there are some risks involved in pregnancy. You are at risk of pre term labour, miscarriage and of hemorrhaging, to name but a few issues. I lost my son’s twin at about seven weeks into my first pregnancy.

Almost immediately into my second pregnancy my pelvis became an issue. Symphysis Pubis Dysfunction (SPD) is a pretty common condition during pregnancy; but not early on in pregnancy. Most women complain of the pain in their groin, back, legs and hips in their last trimester and usually manage with crutches.

The foetus growing inside me was just two inches when my body turned against me. The pain was unreal. I have put up with dislocated joints-even popping them back in myself but this was something else. I could not physically walk without crying. Some days I did try not to use it in order to stay mobile and avoid muscle wastage but even then I had to use special crutches. For days after I attempted walking I would be stuck in bed screaming in pain. Before pregnancy, I was on opiates and they barely took the edge of my chronic pain.

My waters broke weeks before I was due to give birth. I went into the maternity hospital and told them I felt a pop and a trickle. So they examined me and came to the conclusion that my waters hadn’t broken. I went for an appointment in the high risk clinic a couple of weeks later and mentioned baby had been a bit quiet. So they scanned me and lo and behold, half of my waters were gone. So I was induced that night.

Traumatic birth

I was put on IV antibiotics to prevent infection. We were both pretty lucky we hadn’t picked up an infection with my waters leaking.

Several hours later I gave birth but then I started to feel very unwell. I was vomiting and passing out. I was having a massive bleed and the midwives were calling for blood. Luckily, they stopped the bleeding on time and I lost half my blood volume. It took a year and high doses of iron for me to feel “normal” again. The whole experience traumatised me.

Three months and a lot of hard work and I got myself out of the wheelchair for the most part. I still have to use it if I am out of the house for an extended period of time. My pelvis is almost always dislocated and affects my back and legs as well.

Pregnancy could leave me permanently immobile

Progesterone plays a massive role with my condition as it causes my joints to become even more lax. If I were to get pregnant again, it is very, very likely that I will not be so lucky (not so much luck as I put in a tonne of work) to get out of the wheelchair. I have been warned not to get pregnant again. The contraception I am on at the moment but it will have to come out as it is affecting my health. I can not have any “unnecessary” surgery like a tube ligation or hysterectomy. A C Section can not be performed without it being an emergency because I am susceptible to infection, stitches don’t hold well and I would suffer with chronic regional pain on top of the wide-spread chronic pain I suffer with now.

I have two children. I have a husband who is my carer. He does almost all the cooking and the cleaning while looking after our two children and a budding business. There are days where he must help me get out of the shower and even dress me.

If I were to have another baby, I would never have a “good day”. I would be in even more pain than I am in now. An American doctor who used to be an Oncologist has stated that EDS would be one of the top three most painful conditions to live with.

Abortion would be the best decision for our family

I can not put myself in more pain. It is not possible to put my family through more than what they already experience. I have to be a mother to the children I have now

. Ehlers Danlos Syndrome is an inherited condition. My children have a 50/50 chance of having this condition. Both our son and daughter have EDS. Our two-year old daughter is more affected than my son-suffering three dislocations already. I can’t subject another child to this life of pain. I will not. Accidents happen and if I were to get pregnant accidentally, I would have to have an abortion no ifs or buts.

Travelling for any amount of time leaves me bed/couch bound for days. Stress causes my symptoms to flare. If I should need to have an abortion, I should be able to go to my local hospital, have the procedure and go home that night to my own bed, to be surrounded by my family. I should be able to be open about what had just happened and not hide it in shame. I would be making the right decision for my family. The family that is living and breathing.

Up until pretty recently, I was anti choice. It was when I had to travel to the UK for treatment not available in Ireland that my mind was truly changed. I empathised with all the Irish women who had to travel. I cried at the thought of these women being alone because their partners couldn’t get the day off work or because they were raped and didn’t want to tell anyone.

The Eighth Amendment needs to go.

I’m fighting for repeal of the Eighth Amendment not just for me, but for my daughter. EDS gets worse when a girl hits puberty and most of the time, during pregnancy. If she’s already this affected now, it does not bear thinking of how the condition will manifest later on in life. She needs to have bodily autonomy. This condition takes away so many freedoms over our bodies, we do not need anything else taken away from us.

I have started a Facebook page, Disabled People for Choice in Ireland to show the world that despite what the anti-choice might think, there are those with disabilities who believe in choice, no matter the situation.

You cannot have maternal health without reproductive health. And reproductive health includes… Click To Tweet

Some facts from the Abortion Rights Campaign in Ireland:

  1. The Eighth Amendment equates the life of a woman to that of an embryo.
  2. The vast majority of women who want and need abortions are unable to access them in Ireland under interpretations of this law.
  3. Women have already died in Ireland having been denied life-saving abortion procedures.
  4. At least 150,000 women have travelled to other countries to procure abortions since 1980.
  5. Thousands of women are unable to travel for abortion services due to family, legal status, financial situation, or health.
  6. People who procure abortion within the country risk a 14 year jail term. Doctors can be jailed too.
  7. The majority of people in Ireland support much wider access to abortion than is permitted under the 8th Amendment.
  8. The life and health of a pregnant woman has a much greater value than our constitution places on it.

Thank You to Laura and Catherine for sharing their stories with me.

If you would like to tell your story, email hello@thezebramom.com

 

The fault in our genes and the guilt that goes with it

When you’re child is seriously hurt you can feel so helpless. You might feel guilty for not having a sharp eye on your little one when they injure themselves. If you have a faulty genes and a genetic condition that you’ve passed on to your child, there’s an added guilt.

Last Saturday two year old Ollie Pops N’ Clicks was playing happily with her Dad. We had a lovely day up till then, hubby and I were celebrating our five-year wedding anniversary. My Dad cooked us a beautiful lamb dinner and after we retired into the sitting room in front of the stove. Despite having a pain flare, I was content. That is until Ollie started screaming.

She was pulling on her Daddy’s clothes and then all of a sudden her arm was hurting. Nobody could touch it and if we tried to move it she cried. Hubby knew immediately that we were faced with something that happened in 2015. Ollie was just seven months old then. Her elbow was dislocated. She was behaving the same way she did that cold night in November of 2015.

Ollie 7 months
Ollie the morning after she dislocated her elbow the first time

So, we had to leave Bendy Boy with his Granddad for the night as we sped up to the Accident and Emergency Department (A&E) of the University Hospital. She fell asleep before we even made it out of town. I thought maybe she was OK now but when I touched her arm she woke up screaming.

What is a 45-minute journey felt like hours. We arrived into A&E and we were surprised to see how quiet it was for a Saturday evening. Then again, it was still pretty early. The drunks and those involved in fights wouldn’t be in for another few hours yet.

At the hospital

After we checked in, we sat in the waiting area. Looking around I saw a teenager with their arms in a sling, an old man with bandages around his head and another man with a black eye. I was worried that this scene would upset my already frightened two year old. You could tell exactly what was wrong with these people. All you could see when you looked at Ollie was a little girl with a sourpuss face protecting her little arm.

Just like before, the Triage nurse saw us fairly quickly, when we explained what we think had happened and that I have Ehlers Danlos Syndrome. This is a result of my faulty collagen genes. We were taken into the ward.

The last time Ollie was seen in A&E at just seven months old, she had to have an X-Ray. It was torture for us both. I had to move her tiny little arm around in different positions. She cried, I cried. This time however, there was no need to X-Ray because of her history.

When I told the on call doctor that I had EDS, he asked could he have a look at my hands. He bent my fingers back and pulled on my skin. He nodded and turned to little Ollie who was finishing off her second ever dose of painkillers. In two years she’s never been ill enough to need any type of medication. The only time she’s had Calpol is the first time she dislocated her elbow.

Like a punch to the stomach

me and kids
You do what you can to protect them

Anyway, he attempted to take Ollie’s hand but she was petrified. He did eventually manage to get it and within seconds. He confirmed it was dislocated and he said it’s pretty safe to say that my beautiful daughter has EDS. She has inherited my faulty genes. It was like a punch to the stomach.

We knew this since pregnancy but every time I hear a doctor say it again, the guilt gets to me. Ollie is not officially diagnosed with EDS. We hope to rectify that soon just in case social services do get involved during a future trip to A&E.

Like nothing ever happened

Within forty minutes of arriving at A&E we were out the door. Ollie was back to her old self again and I’m pretty sure she was on a sugar buzz after that medicine. She kept talking about how the doctor fixed her and that she was all better now. We arrived home and the three of us sat on the couch to unwind after a stressful couple of hours.

Ollie climbed on me and fed until she was ready for sleep. She then sat up and threw herself on to the couch. I watched her sleep for awhile. She looked so peaceful and you’d have never had known she was in agony just an hour before. We carried her into her new room and didn’t see her till morning. It really is amazing how resilient kids are and that does make it a lot easier to live with a condition like EDS.

Ollie after hospital
Like nothing happened

I know I cannot control my genetics and that I shouldn’t blame myself for Bendy Boy’s diagnosis and Ollie’s inevitable diagnosis. But, I can’t help it; this illness comes from me. If Ollie is dislocating this early on in life it doesn’t bare thinking what will happen, as she gets older.

What does the future hold?

When she starts playschool, when she’s old enough to play outside with friends, when she climbs a tree for the first time. Then there’s puberty. The majority of girls with EDS experience an increase in symptoms when they reach puberty. This is because the hormone, progesterone wreaks havoc on our bodies. Progesterone makes us lax. It’s why girls and women suffer more during their periods and in pregnancy.

How many more times is she going to be in hospital with an injury? Is she ever going to work or have a normal life? These questions whiz around my head. I try to say to myself what I would say to anybody in this situation; cross that bridge when you come to it.

Overcoming the guilt of faulty genes

But, I will eventually overcome this guilt. How? Because I know I am the best person to get my children through what they will face later down the line. I know what they need, who they need to see and where I can take them to make all this happen. The fight for access for appropriate medical care of which there is none in this country will be my biggest challenge. I will take them to the doctor or hospital as many times as they need and I will do it with empathy.

They will be believed when they tell me they are in pain, because I know what it’s like not to be believed. Not being believed by my parents, by friends and by doctors affected me greatly and I still carry that pain around with me. That pain can be just as great as the physical pain my genes have caused me. An old friend once said that she would rather face a pack of rabid Rottweiler than a parent who wants to protect and fight for their children. If you mess with my kids and their health, I’ll go through you for a shortcut.

Be your child’s champion

The Fault in our genes

Having EDS myself makes me the best advocate for my children. Any patient with a rare disease becomes his or her own expert. I will now be the expert for my children too. From how their genes work to the treatment they need, I will be their champion.

It is a great comfort knowing that they will always have each other to lean on for support. Even when I am not there anymore to fight for them, they can fight together.

So, for anyone out there who is feeling guilty for passing on their crappy genes, know this; it is not your fault. I know more than anybody that it’s hard not to. Take a leaf out of my book; take that guilt and turn it into something positive. Raise awareness of the condition, fight for proper treatment, do everything in your power to make your child’s experience with their condition better than what you experienced.

Until next time,

Z.M

x

 

 

The Eighth Amendment: How it Affects Pregnant People with Chronic Illnesses. Part I

*The Eighth Amendment affects people who have the ability to become pregnant In Ireland.

The Eighth Amendment states that the foetus has the same rights as the person who is pregnant. Ireland and Malta are the last two European countries where abortion hasn’t been made legal. The Eighth Amendment was added to the Irish Constitution in 1983. It means that abortion services are unavailable in Ireland. Even in the case of fatal foetal abnormalities or when a woman becomes pregnant as a result of rape. Approximately 12 Irish people per day are forced to travel to the UK to have an abortion.

It’s more than just abortion

But the Eighth Amendment also affects pregnant people who choose to stay pregnant. The big issue I personally have with the way the Eighth Amendment is being portrayed in the media and by the “pro life” side. It is that it’s made out to be solely about abortion. The Eighth Amendment is so much more than the issue of abortion. This week, as the first part of this series, we will look at the issue of consent during pregnancy and birth.

According to the Health Service Executive’s (HSE) National Consent Policy

“because of the Constitutional provisions on the right to life of the unborn [Article 40.3.3] there is significant legal uncertainty regarding a pregnant woman’s right to [consent]”.

 

This section of the HSE’s policy allows the HSE to apply for injunctions from the High Court. These injunctions compel pregnant women to receive treatment when they have not consented. Sometimes, what the HSE are seeking injunctions for is not seen as best practice by international standards.

In Ireland pregnant people are frequently induced early without any medical reason. They are cut without consent, medicated without consent and not properly informed of the procedures forced upon them. This issue of consent was highlighted in the 2014 Association of Improvement in Maternity Services (AIMS) Ireland survey of 2,836 women, where less than half of all respondents said they were given the opportunity to refuse consent to tests, procedures and treatments. Less.Than.Half.

Strike 4 Repeal protest Credit Siobhan Venables

 My own story:

Looking back at my first birth, I was affected by the Eighth Amendment. Induction was to be scheduled just nine days after my “due date”. It was my wish to go the full fourteen days but my consultant said that was not hospital policy. I was afraid to argue because I had seen stories of women brought to the high court and even threatened with social services because they went against hospital policy.  Frustratingly, the midwife who began my induction said by the way I was looking, I would have given birth on my own a couple of days later.

My second birth was quite similar. I wanted so badly to have a home birth but just seeing I had a pre existing condition made me an unsuitable candidate. The midwives knew I wanted to do this so badly. They hadn’t even heard of Ehlers Danlos Syndrome so why was it a straight up no without a consultation with the head of the Home Birth department? Now, having a hospital birth was the best option in the end but I was not given a choice from the get go.

No informed consent, no wishes respected

I specifically told the hospital I did not want an epidural. I was not to be offered an epidural. If I wanted, I would ask for it. Did that happen? Of course not.

The midwives wore me down, they kept insisting and being in pain and exhausted, I gave in. I had no choice in either of my labours. I was not informed that induction would be far more painful than a natural labour or that it would be far more lengthy.

There was no indication that I would be going through my first birth alone because of the Swine Flu epidemic. I was given my orders and at 22, I just went along with it. I was not one to kick up a fuss (that’s changed now). After all, doctor knew best. Or so I thought.

 Long-term effects

For the following six months after my first birth, I had nightmares every night about being induced and being alone for the majority of my labour. My husband was only there for the very last bit of my labour and for the birth. He was with me for the entirety of my second, which made the experience far more positive.

I was told by a midwife recently that if I had been in the UK, that even with my EDS, my choices would have been respected after I had been informed about any risks.

I spoke with other Irish people with chronic illness/disability about how the Eighth Amendment has affected them. This blog has been a long time in the making because I wanted to do justice to their very important stories. Stories that show the Eighth Amendment needs to be repealed.

*Names have been changed to protect the identity of people affected by the Eighth Amendment:

Two women with signs protesting against the eighth amendment
Strike 4 Repeal protest
Credit Siobhan Venables

The Eighth Amendment affected Jennifer with Ehlers Danlos Syndrome:

Initially I hadn’t wanted to give birth in a hospital. My ideal birth was a water birth in the comfort of my own home. I wanted to share a bed with my partner the night our child was born. I hated the idea of him being sent home on his own after helping me through everything.

Unfortunately, I was told what I wanted wasn’t possible. I was told my BMI was two points higher than they would like. Although I never had any complications associated with high BMI that was that. The water birth was not going to happen in the hospital. The head midwife told us the HSE had padlocked an entire wing with brand new birth pools and my obstetrician admitted it was partly because disinfecting the birth pools had been deemed too expensive. I settled on an active birth, low lighting where possible, two birth partners (which I fought for), quiet voices and positive language. There was to be as little intervention as possible.

Jennifer’s Birth Story

At 41 weeks I was brought in for an induction, we had started sweeps a couple of weeks before, but I had excess amniotic fluid so our baby was essentially bobbing and couldn’t engage for long enough to get labour going by himself.

It was a Thursday I was brought in, I was given the max dose of hormone gel on my cervix between then and Saturday. I had contractions and ironically was allowed to go and have a normal bath in my early stages of labour.

The birth I didn’t want

On Saturday I was told my waters needed to be broken. My mother and partner were there with me. I was brought into a procedure room; the ones that don’t have a full bed but instead something closer to a lounge chair. The air con was on and loud enough that we had to raise our voices to be heard. I was told it couldn’t be switched off. When they broke my waters there was meconium in them. The midwives were starting to panic. We were given an hour to get my labour moving or I would be put on a drip.

I asked if I could send one of my birth partners to get my birthing ball from the car and was told they would give me one instead. So I went to the bathroom that was through the maternity triage ward. When the birthing ball finally arrived it was too short for me and under inflated. It far from ideal as I had a badly misaligned pelvis that went untreated throughout my pregnancy and never fully healed.

I was put on continual monitoring, I tried to ask if there was another way as this would prevent me from moving much and I was told we would see. This was about 1pm and it didn’t come off the monitors until after I gave birth at 5 am.

Emotional and physical scarring

It took 5 people to get an IV line into me. Two midwives and two doctors attempted and failed. Eventually an anaesthetist was successful. All of them tried multiple places. They had no issue finding veins but my skin was too stretchy and tough for them to get the plastic part of the line under my skin. Three years later I still have multiple scars from their attempts.

We were left with a midwife to get my labour going once all of that was done.  She was very matter of fact with me and somewhat lacking in bedside manner. She left the room for something and I cried.

I already knew even my most basic wishes weren’t going to be taken into consideration. It was rapidly turning into the labour I was hoping to avoid.

It was rapidly turning into the labour I was hoping to avoid.

My tolerance for pain is high. I’ve walked around on a subluxated hip and fractured tailbone for three weeks without pain medication. I cope quietly until I can’t.  Because of that, my drip was turned up the max amount at every interval. The midwife who relieved the previous one was amazed I was already in the highest dose when she came in. I ended up having one breath between contractions. I was no longer coping well and kept saying I wanted to go home. They checked my dilation, 3cm. I knew I wouldn’t have the energy to get to 10 at this rate. Determined not to have a C-section, I gave in and asked for an epidural.

Before the epidural was administered and we were waiting for the anaesthetist I asked to go to the bathroom. I was told I wasn’t allowed because of the monitors and she would give me a catheter instead. It felt very unnecessary and it hurt.

Hurt, starved and threatened

I was cathetered three more times. The last two I wasn’t even asked, I didn’t need to go, she had to press hard on my stomach and force urine out of me.

When I did get the epidural it only worked on one side of my body, it took 4 hours to rectify. Apparently because I’m a larger lady (I’m a size 18).

Breakfast was served at 7am. My waters were broken before lunch.  I was denied food for my whole labour in case they needed to do a C-section. I went about 23 hours without eating.

C-section and episiotomy were threatened against Jennifer.

I didn’t end up needing either and I didn’t have any tears from giving birth. I did get two minor tears either side of my urethra, where my clitoral hood meets my inner labia.

Man holding sign protesting against the eighth amendment
Strike 4 Repeal Protest
Credit: Siobhan Venables
Medical trauma affected my sex life

I discovered about a year later I also had a tear under my clitoral hood where it connects to the clitoris.

The midwife who pushed either side of my vagina as my son was crowning caused this. It affected my ability to climax for about two years.

These were caused by the midwife who pushed either side of my vagina as my son was crowning. It affected my ability to climax for about two years.

“I did not give consent”

I had wanted to do delayed cord clamping but due to the meconium that wasn’t an option and I’m ok with that. It was my wish to let my placenta to come away naturally. Once my son was delivered they took him to the other side of the room to clear his lungs and check him over. Meanwhile I was given an injection to hurry up my placenta without my permission, which caused a massive bleed, they thought I was haemorrhaging initially. I understand this may have been necessary but there was no discussion, explanation or warning about the injection. I did not give consent.

Thankfully I have a happy healthy child and physically I have more or less recovered. Emotionally and mentally less so. I will not be giving birth in a hospital again unless I have complications during my pregnancy or labour that put my future children or me at risk.

How The Eighth Amendment affected Sarah with Crohn’s Disease:

I have Crohn’s disease, and I had a very rocky end to my pregnancy.

In the third trimester I developed pneumonia, and began having a massive flare. I was given great treatment in the maternity ward and went home.

At home I was spending days on the couch or running to the toilet. I had little energy and each trip to the doctor I was told that once baby arrived they would see what they could do. The main thing was plenty of rest and not losing weight, which I did a good job of- I was huge!

My previous baby was quite small, 5lb 10. I’m pretty petite myself, so I really wasn’t worried when they said this baby was small. I went for weekly scans, and every week baby was there moving away happily growing quite slowly but no signs of anything amiss.

She had an almighty strong kick so I felt pretty confident. I know these things aren’t perfect but one day the consultant called me in. She started tossing around terms like “hospital won’t accept liability” 

‘hospital won’t accept liability’

and when I asked if there was something wrong, she said she couldn’t guarantee this until baby was here.

Unnecessary induction

Something about the way she spoke made me feel like there was something wrong. Apart from my own illness, my vitals, baby’s heartbeats, scans and everything had been going well. I asked her when did she want to do the induction (I didn’t think I had a choice or was giving consent by the way, this sounded like a life or death matter) she said tomorrow.

Without much warning she told me to lie in the bed and said she was going to do a sweep. I was 36 weeks. The sweep was agony in my already inflamed pelvic area.

Sarah’s Birth Story

The next morning I was hooked up to the drip and ready to go. All was going well for the first while, I had strong contractions but I was up and moving about. After a while nothing still, so they turned up the drip and I had even more intense contractions.

Then my Crohn’s kicked in and I had a lot of tummy trouble, and a massive onset of fatigue. I’ll spare the details but I’m usually one to laugh about this and make toilet humour. Not this time. I began to have spasms, which I get when things are bad.

“Don’t be a Martyr”

That was making me push, except now was no time to push. The nurse decided that to spare my body, because in her words ‘baby doesn’t want to come out’ they would turn the drip up again to full.

After this I was told not to be a martyr and have an epidural. Admittedly I cried because none of this my choice.

Admittedly I cried because none of this my choice.

I had a natural birth in the past and knew what my body was capable of. This however was my biggest nightmare to be so ill and scared and having things forced upon me.

I very narrowly escaped a forceps delivery by sheer will. The epidural helped some in the end and all the pushing was stage was over and I held my beautiful girl. She was perfect, as I knew she would be. She was content and happy and safe in there, and could have stayed a few weeks longer.

Postnatal trauma

That’s not where it ended for me though, some time after I suffered faecal incontinence.  It’s been an ongoing issue since. My specialist reckons I should not have had the procedure.

A slow birth wouldn’t have put that strain on me, or a Caesarean if they genuinely felt there was a risk.

My opinion was I could have been monitored in hospital and given fluids, medicines. I think they knew there was no risk. They were just too cautious- to the point I wasn’t allowed to make informed decisions. It was all decided for me, it wasn’t my body and when it was handed back they had damaged it with unnecessary medical interventions.

Woman holding sign at protest against the Eighth Amendment
Strike 4 Repeal protest Credit Siobhan Venables
No bodily autonomy

Sadly, the stories featured today are not uncommon in Ireland. I have rarely come across a birth story where a mother’s wishes were completely respected. Never has a birth experience 100 per cent positive. In 2017, pregnant people do not have bodily autonomy. People with chronic illnesses and disabilities know exactly what their body is capable of. We are stronger than most people in a number of ways. People with long-term health issues face so many obstacles on a day-to-day basis. We already have so much taken away from us because of our disabilities. When it comes to birth and labour, we feel even more helpless. The control over our own bodies is taken away. The Eighth Amendment is directly responsible. Ireland’s Eighth Amendment will continue to take away our rights until it is repealed.

Change needs to happen now

C-Section birth rates in Ireland are three times the recommended figure

. Rates of episiotomy and induction are also alarmingly high in Ireland. These facts are old news, sure, but it just goes to show how controlling the maternity system is over pregnant and birthing people’s bodies.  We have a dictatorship of a Health Service and something needs to change. There needs to be a massive overhaul of our maternity system and that starts with repealing the Eighth Amendment.

Some might say I am being dramatic here but Ireland in 2017 is like living in The Handmaid’s Tale.

Pregnant people are just vessels that need to be controlled and threatened when they disobey.

In any other area of medicine, a patient’s consent must be sought. The hospital in question would have a lawsuit on their hands if they didn’t.

But then again, we know Gender Bias in medicine is a very real thing.

*It’s not just women who can find themselves pregnant. Nine-year-old girls can get pregnant. Transgender men can get pregnant. This is a human rights issue and not just a “women’s issue”.

Thank You to Jennifer and Sarah for sharing their stories with me. I know it can’t have been easy to write it all out and living through the memories again. You ladies are rock stars.

If you would like to tell your story, email hello@thezebramom.com

 

The Zebra Mom in the News

Hey there, hi there, ho there!

So this week’s blog is coming a little early because we are flying off to London tomorrow. This week has been very tough on me because my legs have become so weak that I can not stand up without help. I am on day two of a migraine and nausea too. So driving 3 hours up to Dublin and flying to the UK is going to be very hard on me. This will my third trip in a year going over to London for treatment and testing.

This trip I am having autonomic testing and physiotherapy. The children are also going to see their physio on this trip.

The last couple of weeks have been mental though. We have been on three newspapers, another on the way and I have been on the radio too talking about the lack of care in Ireland for patients with EDS. I am also lobbying for medical cannabis to be granted for those with chronic pain. I found out just yesterday that one of the newspaper articles below was read out in the Dail (Irish Government building) during a presentation about medical cannabis. Apparently my story of just wanting to be better for my children moved a lot of people. Medical cannabis could make that a reality.

The Zebra Mom in the News

Article from The Southern Star by Kieran O’Mahony

‘I’m left helpless to ease their pain’ says Clon dad in bid to get UK treatment

Echo photo

A CLONAKILTY man who says it pains him to see his wife and two young children suffer from a cureless condition, has set up a funding page to help them access treatment abroad.

Martin Nevin set up a GoFundMe page for his wife Evie (30) and their two children Alexander (7) and Olivia (2) who suffer from Hypermobile Ehlers Danloe Syndrome (EDS) and Dysautonomia.

The chronic, multi-systemic conditions have left his wife and children susceptible to joint dislocations and chronic pain and fatigue, as well as many other issues which can severely affect their standard of living.

In a poignant post on the page, Martin outlined why he set it up.

‘It pains me to see these three fantastic people suffer, to watch a woman with so much talent restricted from sharing it with the world, to see a boy with the will to climb a mountain withdraw from fatigue and to see the sweetest and the happiest little girl ever cry with agony due to dislocated joints.’

‘I can do nothing but watch their symptoms flare up. I’m left helpless to ease them and that is why I’ve set this page up so my family can get the treatment they need,’ said Martin.

Although the condition is slowly being recognised here, there are no specialists or facilities in the country to help sufferers, leaving the Nevins with no choice but to seek treatment abroad.

‘The Ehlers Danlos Syndromes are a group of connective tissue disorders which cause the body to produce faulty collagen and collagen is the glue that holds our bodies together. We are also affected by Dysautonomia, which means out autonomic systems don’t work properly. While Alexander and Olivia are not very affected by this condition, it does affect me and it can cause me to faint by simply cooking dinner,’ Evie told The Southern Star.

Evie and Martin have been told by the HSE that there are no plans to help patients with EDS in Ireland, so they are looking to London for treatment. ‘It’s a little too late for me now, as my body was neglected for almost 30 years, but the children are lucky to have been diagnosed so early,’ explained Evie. ‘So with help in the UK, we hope that they won’t become as affected as me.’

Evie said she is almost house-bound seven days a week, and she has been unable to work for several years due to her condition.

‘We want to give our children the best possible chance at a normal life and it’s really only now that I am getting tests and treatments for myself.

‘While we look to getting treatment abroad, we’ve been told that the Treatment Abroad Scheme won’t cover the costs to the UK, because our doctors are private consultants and the Cross Border Directive won’t cover our tests because they need to also be available in Ireland, which they are not.’

Evie and Martin also received another big blow with the recent announcement that chronic pain won’t fall under the Medicinal Cannabis Bill.

‘Medicinal Cannabis is often recommended for EDS patients in the US because patients are often resistant to pain medications, particularly opiate-based pain killers,’ added Evie.

Evie herself has been working tirelessly to get this condition recognised in Ireland and has written extensively on this for many newspapers and journals, as well as spearheading a campaign for all EDS sufferers.

The family recently attended the Hospital of St John and St Elizabeth in London where they met with professors who specialise in EDS and Autonomic Dysfunctions.

‘We have had to break up the trips over to London which is more expensive, so every time we go back they add on other tests and consultancies, so we are going to be fundraising for the foreseeable future.’

The family have set up a Go Fund Me page to raise the vital funds to avail of the treatment in London and they and their friends have already been fundraising by holding events in Clonakilty.

See www.gofundme.com/2befu24c or see ‘The Nevin Family Treatment Fund’ on Facebook.

Interview on C103’s Today show

Play from 56:20 to hear my interview below

 

Article on The Irish Examiner by Sarah Slater

Cork family pleads for help to battle rare illness

A young mother and her two children are battling an illness that is consuming all of their short lives.

Nevin Family

Evie Nevin, aged 30, her son Alexander, 7, and daughter Olivia, 2, have the rare and debilitating condition, hypermobile Ehlers-Danlos syndrome (EDS).

Although EDS is slowly becoming more widely known in Ireland, there are no specialists or facilities in the country to help people with this condition.

There is no cure for EDS, but with careful management and specialised physiotherapy the quality of living for someone with EDS can be improved.

Most Irish EDS sufferers are referred to Rodney Grahame, consultant rheumatologist at the Hospital of St John and St Elizabeth, London, who has said: “No other disease in the history of modern medicine has been neglected in such a way as EDS.”

Members of the EDS community have campaigned for specialist treatment here, to no avail. They recently learned that there are no plans by the Government or health services to implement any.

Evie, from Clonakilty, Co Cork, is prone to hip and wrist dislocations on almost a weekly basis. She is extremely effected by changes to pressure and can be left bed-ridden with pain from something as small as a rain shower.

I went from getting up at 6.30am and getting home at 9pm working as a journalist in 2012 to being someone just existing in 2013,” she explains.

“I remember being very self-conscious all the time because I rarely had the energy to get dressed and people only really saw me in my pyjamas. I got called lazy a lot. That hurt. I didn’t know what was wrong with me, but I knew it wasn’t laziness.

“When Alex was diagnosed my heart broke. I felt so guilty. My genes did this to him but, thankfully, I’ve moved past that now because what’s the point in feeling guilty? He’s lucky that he has been diagnosed so young and that he has an excellent school who support him by providing resource hours, an SNA and movement breaks.

“It was confirmed for me before Olivia was born. I felt her skin and saw the hint of blue in the whites of her eyes when she was born.

“My heart goes out to Martin. He didn’t ask for this at all. When we first met I was still relatively ‘normal’.”

Evie’s husband Martin, 29, has thrown himself into fundraising to get his family the specialist treatment they need, as well as being a videographer. He’s also determined to keep their spirits up.

“I feel like such a burden to him, but he never makes me feel like that,” says Evie. “Even on days when I’m in agony and not so pleasant in my manner, he doesn’t complain. He has never once made me feel bad for being sick or for the kids inheriting my genes. It’s all down to me and my issues.

“He took his ‘in sickness and in health’ vow very seriously! He’s a brilliant dad and husband and treats us when he can so we have things to look forward to. When you’re stuck at home six days out of the week, most weeks, looking at the same four walls, you need something to keep you looking forward.”

For now, the focus is on fundraising, but the Nevins are facing the fact that they may have to emigrate to properly deal with the condition. They have been told they cannot access either the Treatment Abroad Scheme (TAS) or the Cross-Border Directive (CBD).

“The TAS only covers treatments available on the NHS,” says Evie.

“The Hypermobility Unit in St John’s and St Elizabeth’s in London is a private hospital so our consultancies and treatments won’t be covered.

“The CBD will only cover medical issues that are also available here in Ireland and the tests and scans I must have in London are not available in Ireland.”

In a statement, the HSE said: “EDS is treated across Europe by multidisciplinary teams, often led by physiotherapists, with extreme cases being sent to orthopaedic for corrective surgery. EDS is readily treated in Ireland by physiotherapists. There is no specialist centre in Europe or the UK.”

Evie refutes this: “There is no treatment available here, no matter what they say. The people in charge will say rehab in Harold’s Cross is an option, but they are in no way experts and the reviews from my community haven’t filled me with any confidence that they could take care of me and my complex conditions.

“Right now, we are aiming to move abroad somewhere where there is better care and where the air pressures are more stable than Ireland. The kids are becoming affected by the pressure changes too. Both of them wake in pain when we have particularly nasty weather.

“Obviously I can’t blame the Government for the weather, but I do blame them for not setting up a clinic for people with connective tissue disorders.

“We need somewhere with a multi-disciplinary team like in London. We need consultants that communicate with each other. Things slip through the cracks because of the lack of communication and a holistic approach.”

One development that could make a huge difference to the family’s lives is medicinal cannabis. Those with EDS are often resistant to pain medications and they find it difficult to manage their pain. Medical cannabis is recommended for EDS patients in the US.

There is an increasing call by medical support organisations for greater access to medicinal cannabis for patients with debilitating conditions.

A Health Products Regulatory Authority report published last month advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with three conditions — spasticity associated with multiple sclerosis; intractable nausea and vomiting associated with chemotherapy; and severe, treatment-resistant epilepsy that has failed to respond to standard anticonvulsant medications.

“When health minister Simon Harris announced that only three conditions would be approved, none of which are related to chronic pain, I was devastated,” says Evie. “I had been hopeful and excited at the idea of having some normality back in my life.

“Medical cannabis could be seriously life-changing for my family and me. In the US, EDS experts highly recommend cannabis as a form of pain relief as many patients are resistant to painkillers, specifically opiate-based pain medications.

“I have changed pain medications so many times because I’ve become resistant pretty quickly to them. This is now starting to happen with my current medication, Tramadol.

“I’d rather have medical cannabis over my Tramadol because taking 5,000 painkillers a year can have serious repercussions on my body. If I can access cannabis safely and with help from the HSE, I may not develop symptoms of long-term opiate use such as depression, hormonal dysfunction, and respiratory depression, to name just a few.

“I have used cannabis-based products to manage my symptoms. I use a MediPen, which has been helpful for my chronic fatigue, but not for my pain. I have smoked cannabis and I find that, on days when my Tramadol isn’t working, it’s the only thing that helps manage the pain.

“I also find it good for my appetite because I don’t eat a lot when I’m in a lot of pain. I’m so nauseas and I find Tramadol suppresses my appetite sometimes. There are days I’d be lucky to get 800 calories into me. I would like to be able to access cannabis legally so that I can function a bit better in my day-to-day life and be a better mother and wife to my family.”

For now, another round of tests and physiotherapy for Evie, Alexander, and Olivia at St John’s and St Elizabeth hospital in London, as well as flights, accommodation, and private medical consultations in Ireland, mean the young family need to raise in the region of €10,000 for the first trip.

Martin says: “It pains me to see my family suffer. I can do nothing but watch when their symptoms flare up. I’m left helpless.

“So I’m asking the public for their help, as a father and as a husband, to send my family to get the treatment they need. Anything you can spare, even a few euro, will make a massive difference.”

You can find out more on their GoFundMe page, or on Facebook.

The symptoms

Ehlers-Danlos syndrome is a genetic connective tissue disorder that affects the joints, skin, and blood vessel walls.

Sufferers usually have overly flexible joints and stretchy, fragile skin. This can become a problem if a wound requires stitches.

There are 13 types of The Ehlers Danlos Syndromes and symptoms vary.

Overly flexible joints can result in dislocations and early-onset arthritis. Fragile skin may develop prominent scarring. Those with the vascular disorder are at risk of often-fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, may also rupture. Pregnancy can increase these risks.

In other forms of the disorder, fainting and low blood pressure occurs because blood vessels stretch. Stomach wall lining is fragile and bowel ruptures can occur. Constipation and other motility (movement) disorders feature, as does gastroparesis (paralysis of stomach; inability to process food).

Excessively loose joints are the hallmark of hypermobility disorder as suffered by Evie, Alexander, and Olivia. Large joints and small joints are affected. Partial and total joint dislocations are common. Many experience chronic limb and joint pain.

ENDS

It has been a crazy couple of weeks and thanks to these journalists, we have reached our first goal of 10,000 Euro! When the Irish Examiner piece came out over 2,000 was raised in that day alone. I am truly blown away by stranger’s generosity and kindness.

Another good thing that came out of all of this is that I have had parents from all over the country ring me to ask for advice regarding their children. Sadly, and also not surprisingly, many families are given diagnosis but then offered no support or solutions. In Ireland we have to fight for every support we get. This is no country for disabled people. The entire health system is lacking in every sector.

Standing up and speaking out does work. You just got to keep chipping away at the block. I truly believe my story has made a difference in regards to awareness and lobbying for medicinal cannabis.

Next on our press list is an article with the Evening Echo. We hope that some more newspapers, radio stations and TV stations get in touch. Not so that we can fundraise, but to raise awareness and give chronic pain patients a voice.

Until next week,

Z.M

 

 

Friday Feelings with The Zebra Mom

Hey there, hi there, ho there,

This week I didn’t have any guest post submitted so, I decided to do a Friday Feelings post myself.

Usually I explain what my guests suffer from and a they tell us a little about themselves but I’m sure anyone who follows my blog is well aware of my conditions and the things I am passionate about. I will take the oppurtunity to plug my social medias though :p You can find me on Facebook, Twitter, Pinterest, Instagram and Snapchat (see the snap code in the header)

evie blog

So we will just dive straight into this week’s Friday Feelings post

 

giphy

“Dear Diary,

It’s Friday and for once, I’ve had an excellent night’s sleep and I’m feeling relatively OK. Usually I wake with something wrong but luckily, I have no more pain that the usual aches. I am so happy that I’m feeling well as can be since I am celebrating my 30th birthday tonight with family and friends. It is not often I get to socialise and get dressed up so when it does happen I appreciate it so much. I’ll probably run low on spoons after I finish getting myself ready but I am hoping the adrenaline will kick in and help me enjoy my night. I also have to be weary of certain lighting in pubs as my sensory issues can cause havoc when I do get the chance to go out. My typical Friday nights are usually much more boring. I sit at home and spend my time watching the Gilmore Girls or socialise on Facebook.

Even though I feel OK right now the last few weeks my EDS and Dysautonomia has been acting up a good bit forcing me to use my wheelchair. I hate using it, it makes me feel very self-conscious but I know I would be much worse off if I didn’t use it. Yesterday we went into the city to take our little boy shopping for new party clothes and if I didn’t have my chair, I wouldn’t have been able to enjoy our time. It’s a frustrating time for us at the moment as we are currently fundraising to get back to London for treatment. This 5-night trip is costing us 5,000 Euro. Luckily I have some really good friends and family who helped us raise 765 Euro a couple of days ago at our coffee morning. We couldn’t believe that that amount was raised in just a couple of hours! The community really came together to support us. I was truly blown away.

The future is uncertain but I am hopeful that getting treatment in London will give the children and me a fighting chance at some normality. I am having Autonomic tests in London to find out exactly which type of Dysautonomia I have. Here in Ireland I have been diagnosed with Orthostatic Intolerance and Vasovagal Syncope but the experts in London believe I have Postural Orthostatic Tachycardia Syndrome (PoTS). They believe Alexander also has PoTS but luckily he isn’t greatly affected. I also see symptoms in Olivia too.

I think as time goes on, people are understanding our conditions better and know that they are invisible illnesses and that some days I need my wheelchair and some days I don’t. I think the fact that we have had to go to the UK and fundraise thousands made people realise the severity of our conditions. It’s a shame that it has had to come down to this but I am content that those nearest and dearest to us take things seriously. I have had negative experiences with the way people has viewed EDS before. One doctor said that people with EDS didn’t suffer from chronic pain (I know, I know) and that I more likely had Fibromyalgia. Now, many experts do believe that most people diagnosed with Fibro have actually been misdiagnosed and that they actually have some form of Connective Tissue Disorder. I told her this and she was most unimpressed to be challenged. Pregnant and wheelchair bound, I left that appointment in tears in pure anger and frustration. A Rheumatologist diagnosed me with hEDS at that point but I saw another one to confirm the diagnosis because I felt the private consultant’s diagnosis wasn’t being taken seriously. I had the diagnosis confirmed by two experts in London so I am pretty confident hEDS is the right fit but I am going to have genetic testing just to be sure as I do fit a couple of the types of EDS too. I think anyone diagnosed with hEDS should have genetic testing to rule out other types and other Connective Tissue Disorders. If the tests come back clear, I’ll be happy sticking with the hEDS diagnosis.

Anyway, better start getting ready for my hair appointment and party. Wish me luck that my EDS or Dysautonomia doesn’t kick off!”

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

Till Sunday,

Z.M

x

 

 

 

 

Friday Feelings with Irish Dysautonomia Awareness

Hey there, hi there, ho there!

This week I spoke to Lette from Irish Dysautonomia Awareness. Lette suffers from Hypermobile Ehlers Danlos Syndrome (hEDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , Sphincter of Oddi Dysfunction (SOD), Neurogenic Bladder Dysfunction and Gut Dysmotility, to name but a few of her conditions. You can find Lette on Twitter, Facebook and Instagram.

Lette
Lette and her baby, Boo.

Hi I’m Lette. When I’m am able for it I love to play retro video games, photography, drawing, craft, listen to music. I like to internet hop and watch shows like Game of Thrones, The Walking Dead, The Expanse and Black Sails with my wonderful husband and our little dog Boo.

So now we know a little about Lette, let’s have a read of her Friday Feelings entry.

giphy

“Dear Diary…

It’s another Friday, they have begun to all feel the same these days, days melting into weeks, melting into months that float by me at high speed and I still seem to be stuck here in my bed, in a dark room, feeling putrid!

Motivation seems to have upped and all but disappeared. I think of all the things I have achieved throughout my life before I got very sick and everything went downhill in 2011. I got my art degree, my Masters of science, worked as a fitness instructor, (can you imagine?) as a wedding and events photographer and videographer, as a teacher in adult education and as a lecturer in third level. That was just education and work, when I had the proper use of my legs and body, my husband and I used to just love going hiking through the wild woods and lakes of Killarney with the dog and cameras in toe, I loved to drive and cycle and swim and walk aimlessly through fields for hours with the camera just because I could and I felt immense joy in looking back at and sometimes editing the photos and the memories I had captured while out.

I used to love drawing, animals especially and now it has been so long since I lost myself in any art. I forget what it’s like and I miss it but the energy is never there in recent times for me to act on that longing.

I don’t do any of these things anymore, I find I am spending more and more time in bed as I am just not capable, the majority of the time, of being upright. Either I am in severe pain with my gut issues or severe pain in my hips and shoulder joints, or the worst pain at the moment is coming from the back of my head / base of my skull / top of my neck pain which causes white blinding headaches where I can do nothing but lie in a dark room and moan. No phone, no laptop, no reading, no entertainment. Just darkness and constant pain and nausea or POTS issues where my blood pressure is so low I can hardly turn over in the bed. It wears you down.

The only time I get out these days is not to visit friends or family like I used to regularly do, but instead to go to hospital and consultant appointments and even then I have to reschedule many because I am too ill to go!

I’m getting gloomy but I don’t mean to be, because something different happened yesterday. I had to update the house insurance! What? Bear with me! Honestly, it gave me a sense of purpose, for all of those 15 or so minutes I had something, relatively important, to do and it felt good!

This morning I helped make the breakfast with the husband, put laundry washing on, picked up the Nintendo DS for the first time in ages and played Earthbound and I even had a shower. This may sound utterly silly, but to me, these are huge achievements! The shower is a funny one, I actually have to way up my energy for the day against the effort of a shower and believe me, I may not have the energy for days. It can get a tad funkay in fairness!

So while many friends of mine will be going out on the town later tonight or this weekend and I know a few others who are jetting off on a few days holidays in Europe, all I can achieve is having a freshly washed dressing gown, a nice shower, fresh fluffy socks and a hot cup of tea! Where once I would have drowned my sorrows in that cup of tea, tonight I am smiling because I know its ‘the little things’ that should and do count the most.

I have so much to be happy for. My wonderful husband, our amazing dog, my loving family and friends, the generosity of strangers who have helped with my medical fund, a relatively successful blog and related social media links, my talents have gotten rusty but I can get them back if I just try even one new thing every day.

Anyone can achieve anything if they just try and thats alright with me!”

A big thank you to Lette for taking part in our Friday Feelings blog.

Do you relate to Lette’s entry? Do you find joy in achieving what most people would take for granted in being able to do? Comment below and let us know what you thought of Lette’s entry.

Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

So until Sunday

Z.M

x

 

 

The Zebra Mom’s journey to London.

Hey there, hi there, ho there!

As I’m writing this it’s Rare Disease Day. I have a rare disease called Hypermobile  Ehlers Danlos Syndrome. This condition is believed to affect 1-5,000/10,000 people. Although, many experts now believe it may not be rare at all, just rarely diagnosed. The new diagnostic criteria (released on March 15) may lead to a more concrete number.

Anyway, so I said earlier on in the week that I would explain my absence from social media and why my blog was late and it just so happens to fit in nicely with Rare Disease Day.

Taken from the Journal.ie:

The National Rare Disease Plan for Ireland up until 2018 was launched in 2014 by the former Health Minister, James Reilly.

The key recommendations include creating both a Clinical Care Programme and a National Office for Rare Diseases.

The Minister said, “This is a very important plan because we have 8,000 different rare diseases in a small island like ours. It’s very difficult for patients to get a diagnosis and then indeed treatment.

So we had a young man here earlier who had his picture taken who is having is treatment in the UK at the moment for his rare condition.

Reilly explained how this plan has looked at “how to shorten that journey and reduce the frustrations that people experience trying to get a diagnosis, and then indeed organising the treatments.”

The former Health Minister said a designated Clinical Care Programme for rare diseases will improve specialist services and allow for the development of a joined up model of care for patients. While the National Rare Diseases Office will identify Centres of Expertise for various rare diseases, provide a helpline function for patients and families and provide surveillance of national rare diseases.

James Reilly added:
The significance of this plan cannot be overstated because it provides us with a roadmap for the prevention, diagnosis and treatment of rare diseases.
“I fully endorse this plan as the means to positively shape how we look after people with rare diseases in Ireland”.

So at present, there are 8,000 diseases affecting millions of Irish citizens. Although we might be genetically rare, together we are actually very common. 1 in 10 people in the UK have a rare disease.

So three years later has anything changed for rare disease patients? From what I can tell? No. Well at least nothing for anyone with my condition. We still have no Clinical Lead Consultant, no schemes to help us get Treatment Abroad. The current Treatment Abroad scheme only covers referrals to public consultants. All the experts in the Hypermobility Unit I attend are private. There is still a huge lack of awareness amongst medical professionals. The length of time to get diagnosis is still too long or it never happens at all. Approximately 90% of patients I surveyed learned about Ehlers Danlos Syndrome before the diagnosis was confirmed. So it’s the patients that are essentially doing all the work. My own story to diagnosis reflects this.

As I’ve said my reason for being late with this blog fits in nicely with the reflection of how rare disease patients are treated across the world but particularly in Ireland.

I was called by the wonderful Professor Rodney Grahame Friday two weeks ago. He asked me to come to London the following Wednesday to be examined as I am having some rather bizzare symptoms. Just before I get a migraine/headache one of my eyes bulge, the headache starts shortly after and my nose begins to pour a water-like fluid.

bulging-eye
My eye at the beginning of an episode. Note my right eye (your left) is bigger than the other one. It will get slightly bigger as time goes on.

Professor Grahame had never come across these symptoms before which, for him would be rather rare in itself. He said I should go ahead and have my upright MRI and I only got my appointment times the following Monday. I had to fly to London the following day to be at Professor Grahame’s clinic on Wednesday morning.

The flights were phenomenally expensive and on top of all the stress of sorting out flights and accommodation, I had to leave my daughter for the very first time. She is almost 2 and we had never been apart longer than a few hours, let alone 3 nights and two days. We cosleep and breastfeed so we are very connected. I had to organise getting a breast pump so I wouldn’t get mastitis, plugged ducts or reduce my supply. Luckily, I am apart of a very close knit breastfeeding community so one lovely mummy donated a snazzy electric pump to hold on to as I’ll be over and back from London for the next year at least.

So on Tuesday my Dad and I flew to Heathrow via Cork airport. I brought my wheelchair with me as I was approaching that time of the month which makes me more prone to dislocation and soft tissue injuries. Plus going around London for 2 days was going to be tough on me anyway.

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Me arriving at Earl’s Court Underground

We stayed in Earl’s Court as per usual as it is a handy spot in the centre of everything. We were one tube stop away from the upright MRI clinic, Medserena on Cromwell Road and just 15 minutes from St John’s and St Elizabeth’s in St John’s Wood. Earl’s Court is also only one stop away from Kensington which is where all the big museums are such as the the Science Museum and the Natural History Museum.

On Wednesday I got to meet the wonderful Jared, Sarah and Annabelle Griffin of Annabelle’s Challenge before my appointment with Professor Grahame. I’m speaking at the Vascular EDS conference Jared is organising in May. We also combined forces and launched the REDS4VEDS campaign worldwide to raise awareness of Vascular EDS.

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From left: Jared, Dad, Me, Annabelle and her friend at St John’s Hospital.

At noon I met with Professor Grahame. I am thrilled that he managed to squeeze me in during his last week of clinic as he is retiring from the Hypermobility Unit. He examined me and looked at the photos of my bulging eye.

He questioned whether I might have a problem with my Cerebral Spinal Fluid (CSF) and we also wondered whether I might have a Chairi Malformation as I have had weakness and other issues linked to Chiari for years.

Luckily Dad was on hand to show him a photo of my eye bulging and gave my medical history as a child specifically mentioning the weakness on my left side and my problem with going anywhere with artificial light and crowds as a child. I know now that it’s sensory processing disorder but nobody has put that down on paper as yet.

The next day we went to Medserena for my upright MRI. Two very dear Zebra friends of mine warned me that this wasn’t going to be as easy as a supine MRI and that both of them had never fully recovered from the scan. I really underestimated their warnings.

Professor Grahame had actually rang the clinic to make sure I was seen the day after my appointment with him. He ordered a scan of my cervical spine and craniocervical junction.

The staff at Medserena was very accommodating and polite, you didn’t feel like a client, you felt a visitor to someone’s home, not a cold and sterile clinic.

I went into the dressing room to put my valuables in the safe. Luckily, I had dressed in a loose top and a pair of leggings so I didn’t need to put on a gown. Just before I went in I took my Tramadol and Midon as suggested by the friends who had undergone this scan before.

Nervous, I found myself thinking about my children and husband. I pictured Olivia crying for mummy’s milk and Alex looking for cuddles in the middle of the night. I should be at home with them tonight, not hundreds of miles away across the ocean.

I sat down in the machine, luckily I got to sit as I was expecting to be standing. The scan wouldn’t have lasted that long if I was to stand because of my Orthostatic Intolerance.

The first position I had to look straight on. Because the scan takes 1.5 hours in total., the radiographer put a film on for me to watch. I had a choice between Skyfall or Tarzan. Didn’t matter to me either way as I didn’t have my glasses on, I could see diddysquat.

So, after the first position it was time to flex my neck downward, then upward and then right. There were a few occasions we needed to repeat scans as my images came out blurry. I had no idea why as I had stayed as still as I could. It’s ridiculous how still you have to be in an upright compared to a supine MRI. You can’t cough, you have to be breathe shallowly and you can not swallow. So you sit there five minutes at a time with saliva pooling in your mouth and your neck flexed in a position for five minutes.

When it came to my last position (neck turned left) I was in agony. After two attempts of this position, we had to give up. I was visibly in pain and it showed in the scans as they were very blurry.

Once I gathered my things in the dressing room, I went back into the reception and burst into tears. Not because of the pain-it’s not often that pain will make me cry now. No, it was my “fight or flight” mode gone into overdrive. I was so overwhelmed with the whole situation. Since the MRI finished at 5.45 (I went in at 3.45) my back, shoulder and neck had been giving me trouble.  Two weeks later the problems persists with swallowing becoming uncomfortable and slightly painful.

The lovely receptionist brought me some juice and chocolate for my shock. I was a mixed bag of emotions. I felt like I had been something very traumatic had just happened to me. For those of you who’ve not gone through this, it might sound dramatic but those who’ve been through this know my feelings are perfectly valid. The radiographer gave me a CD of my scan images and we left.

I’m sure for people without my issues, the MRI isn’t as draining or painful. But with the problems I have with my neck, it was torture.

That night I took a sleeping pill and slept from 9.30 until we had to get up for our flight at 7am. I had a headache like I was hungover, my whole body ached more than usual. This scan really did a number on me. But, I was going home. I’d see my babies and my husband and sleep in my own bed tonight.

The Aer Lingus staff were amazing on the flight home, very pleasant and very accommodating. Even though we were 30 minutes late taking off, we arrived just shortly after our arrival time. I was brought to the front of the queue in my wheelchair for every point in Heathrow and again in Cork, much to Dad’s amusement and delight.

When we came through the arrival doors of the airport the children saw me. Alex came bounding over and it took Olivia a second or two to realise mommy was home. She then came running over. Of course, it didn’t take her long before she climbed on my lap and latched on. Hubby came over with a big bunch of flowers to welcome me home. I have been on many trips before but never had a welcome party like this. My heart swelled.

The journey home was tough as the roads in Cork are abysmal especially after Hurricane Doris had come sweeping through.

I landed myself into my usual spot when I got home, on the couch. I’ve been quite ill since and have only managed to leave the house a couple of times in two weeks.

I received my report from Professor Smith in Medserena last Wednesday. Thankfully no Chiari was noted.

mri
Images from my upright MRI

The report was very detailed being four pages long. Here’s the Professor’s conclusion:

  1. In the cervical spine there is reversal of the normal cervical lordosis in the neutral position with evidence of instability at the C4-5 and C5-6 levels.
  2. There is no evidence of basilar invagination or of cerebellar tonsillar ectopia.
  3. Whilst the atlas is normally aligned over the axis. There is deviation of the odontoid peg to the left in the presence of intact ligaments of the craniocervical junction ligamentous complex.
  4.  On looking to the right and to the left the odontoid peg moves to the contralateral side indicating an element of laxity of the ligaments.

I am awaiting a call from one of my consultants to discuss the results and a course of treatment for my issues.

I return to London on April 9th this time for Autonomic Tests and physiotherapy. The children will be coming with me this time to be assessed by their physio too.

It’s downright criminal that we need to disrupt our lives even more and travel abroad to access experts and have these tests. They are nothing overly complicated and could easily be done here in Ireland but nobody does them. There are physiotherapists in Dublin who could look after the children but it is actually more hassle travelling 3 hours to Dublin than it is flying 45 minutes to London. At least we know the children are in safe hands there.

rare disease

I came across this image a few days ago while writing this blog and it really does ring true. This statement does not ring true to the doctors who look after us in the UK, of course but to the medical professionals who have no urge to learn or help those of us with Ehlers Danlos.

The theme of my talk at the Vascular EDS conference is about this very topic. Patients become the real experts when it comes to their condition. We know more about it than doctors who have trained for a decade or more.

I am the driving force behind my own medical care. For years I let doctors fob me off and dismiss my issues as nothing more than depression.

Luckily I have a great GP now who listens and does exactly what I ask her to do. I’m in charge of my own referrals, meds and treatments. She trusts my gut and knowledge. I am so grateful to have her, I know so many others who are not quite as lucky.

As I said, we are back in London in April and this visit is going to cost us 5,000 Euro.

I have friends helping to fundraise through coffee mornings and the likes.

My GoFundMe has been our main source of treatment money so far and I’ve been blown away by people’s genorosity.

Until Friday,

Z.M

x

 

 

Dear Minister Harris- aren’t you forgetting someone?

In 2016 the Dáil has passed a bill to make cannabis available in Ireland for medicinal use, after the Government said it would not oppose the legislation. People Before Profit TD Gino Kenny, the bill seeks to legalise and regulate cannabis products, which are used for medical purposes. Mr Kenny said his bill intended to make cannabis available to those with chronic pain, epilepsy, cancer, MS, Fibromyalgia and, under a doctor’s recommendation, would help to alleviate symptoms of illness.

Minister for Health, Simon Harris said that although he has concerns about some elements of the bill, he will not oppose its progression to Committee Stage. Mr Harris asked the Health Products Regulatory Authority (HPRA) to advise him on the scientific and clinical value of cannabis as a medicine. He said he wants to receive that advice from the agency before progressing the legislation any further.

The Minister also indicated that amendments would have to be made to the proposed bill to avoid the unintended effect of making cannabis legal for recreational use.

Minister Harris said he strongly believes that Ireland needs to take a look at policy in relation to medicinal cannabis, saying a number of countries have already taken the steps to make it available. He said he has met a number of patients and patient groups over the last few months who have highlighted their belief that it could relieve pain.

After the HPRA released their report, Mr Harris then released a statement about how things will most likely go ahead in regards to the use of Medical Cannabis. Check out this extract:

“The report stated that patients accessing cannabis through the programme should be under the care of a medical consultant
Medicinal cannabis will be made available to patients in the Republic of Ireland with certain types conditions. I’ve asked my officials now to outline to me how quickly I can put a compassionate access programme in place.
The minister thanked the Health Products Regulatory Authority (HPRA) and the members of the Expert Review Group for their work on the report which he described as a “milestone” in the development of policy on medicinal cannabis.

“This report marks a significant milestone in developing policy in this area. This is something I am eager to progress but I am also obligated to proceed on the basis of the best clinical advice. The report notes that this is ultimately a societal and policy decision and I have decided to proceed with the advice of the HPRA and establish an access programme for cannabis-based treatments for certain conditions, where patients have not responded to other treatments and there is some evidence that cannabis may be effective,” Mr Harris said.

The HPRA report advised that, if a policy decision is taken to permit cannabis under an access programme, it should be for the treatment of patients with:

Spasticity associated with multiple sclerosis resistant to all standard therapies and interventions whilst under expert medical supervision.
Intractable nausea and vomiting associated with chemotherapy, despite the use of standard anti-emetic regimes whilst under expert medical supervision.
Severe, refractory (treatment-resistant) epilepsy that has failed to respond to standard anticonvulsant medications whilst under expert medical supervision.

Now, I am delighted that those suffering from the conditions mentioned above will get relief by using Cannabis but, I have a very big concern. What about those of us with chronic pain? What happened that we have become excluded from the list?

In his letter published on chronicpain.ie, Professor David P. Finn, PhD states:

“We now know from thousands of peer-reviewed scientific publications that the endocannabinoid system plays a key role in regulating physiological processes including pain, stress/anxiety, appetite, learning, memory and cell development.

Multiple laboratory and clinical studies support the effectiveness of cannabinoids for the treatment of a wide range of disorders, including chronic pain, multiple sclerosis, epilepsy and others. Further randomised, double-blind controlled clinical trials looking at larger patient numbers and over longer time frames would certainly be welcome.

Evidence to date suggests that the adverse side-effects of cannabinoids used in a clinical context are mostly mild, and not overtly serious or life-threatening.

We should also remember that cannabis plants can vary considerably, with different strains containing very different contents of THC (the constituent responsible for the ‘high’), and with over 100 different cannabinoids present in varying amounts across different strains, many of which do not have abuse potential but may still have significant therapeutic potential (e.g. cannabidiol)

There is no strong rationale for treating cannabinoids any differently than, for example, opioid drugs such as codeine or morphine, both of which are derived from a plant (the opium poppy), have been mainstays in modern medicine for decades, have abuse potential, and whose adverse effects, dependence liability and potential for harm are in fact significantly greater than those of cannabinoids.”

Professor Finn PhD is Professor of Pharmacology and Therapeutics in the National University of Ireland Galway and President of the Irish Pain Society.

I take 5,000 pills a year for my pain. 5,000. Let’s say I continue on these doses and I live to the ripe old age of 80. That’s 250,000 pills. A quarter of a million pills. In comparison to some of my friends, that’s a very low figure.

What happens to our bodies when we are on opiates long term?

Long term opiate use can cause veins to collapse

Can cause sedation

Can slow the digestive system (Gastroparesis)

Can cause greater sensitivity to pain (Hyperalgesia)

Can cause muscle rigidity

Can make the immune system weak

Can cause respiratory depression

Can cause twitching of the muscles (Myoclonus)

Can cause Hormonal Dysfunction

Can increase the risk of depression

the list goes on and on. I can’t imagine taking 250,000 pills for the next 50 years is going to do my liver any favours either!

Essential oil made from medicinal cannabis

What about Medicinal Cannabis?

Marijuana does have any proven side effects. THC binds to cannabinoid receptors, which are concentrated in areas of the brain associated with thinking, memory, pleasure, coordination and time perception. The effects of marijuana can interfere with attention, judgment and balance. Some studies have produced conflicting results on whether smoking marijuana carries a significant cancer risk but there’s nothing concrete. There is also conflicting evidence on whether long term use of Cannabis effects one’s mental health but again, nothing concrete. Scientists say that it may increase the risk of psychosis but, those studies seemed to focus on the use of Cannabis in teens and young adults recreationally, not medicinally. If someone has evidence to state otherwise, please do let me know so I can amend this.

There is a plethora of evidence that shows Medical Cannabis can be very beneficial for patients with chronic pain. Many of us would opt for Cannabis as it is diverse and doesn’t need to be smoked. It’s also natural so we could cut way back on the manufactured pain meds. Surely it would be much cheaper for the HSE to supply chronic pain patients (who have medical cards) with something that can be grown in abundance than to pay for trillions of pills each year?

Taken from Irish Health, ‘Long Waiting Times for Chronic Pain Patients’, Jan 2016

“Chronic pain affects around 13% of the Irish population, however those affected have to wait an average of two years before seeing a doctor specialising in this area. According to Dr Dominic Hegarty, a consultant in pain management at Cork University Hospital, chronic pain ‘presents a major challenge to the citizens and the economy of Europe’.

Most people affected experience their pain for more than two years and some are affected for 20 years or longer. Chronic pain patients make an average of seven visits to healthcare providers every year, with 22% making more than 10 visits.”

Imagine how these stats would change if medical cannabis was prescribed to chronic pain patients? If cannabis is as effective as the experts say for chronic pain patients, it could mean waiting times drastically reducing as many patients wouldn’t need to see as many specialists.

There is so many things wrong with our health system here in Ireland. Waiting times are abysmal across the board. Many of us finally get to see the specialists, get prescribed a cocktail of meds, exhaust all options for it not to work. The patients are loosing out. What does the Government have to loose by allowing those who have exhausted all options to try medicinal cannabis?

Let me leave you with this, dear Minister. People with chronic pain are three times more likely to develop psychiatric disorders according to Harvard University. So, not only are the Government and HSE footing the bill for pain treatment but for psychiatric treatment also. Three times more likely to develop conditions such as depression and anxiety, is it any wonder why there is such high rates of suicide amongst the chronic pain community?

Please think about the implications of excluding those of us with chronic pain. By allowing us to give medicinal cannabis a try, you’re potentially giving a piece of a person’s life back or saving one.

Sincerely,

A sufferer of chronic pain, a mother of two children with chronic pain disorders and of course, a citizen of Ireland.

 

 

 

 

A Simple Guide to The Ehlers Danlos Syndromes

UPDATE: On March 15 2017, criteria and classifications of The Ehlers Danlos Syndromes were updated for the first time in 20 years. In light of this, I will update my guide (with the new information made available) to highlight new diagnostic criteria and classifications. You can read more about the changes here.

Because there are now 13 types of EDS, I have only covered Hypermobile Ehlers Danlos Syndrome (hEDS), Vascular Ehlers Danlos Syndrome (vEDS) and Classical Ehlers Danlos Syndrome (cEDS). If you would like me to do another guide to the rarer types, please comment below or email me. I would be more than happy to oblige!

“You’re suffering from Fibromyalgia!” “You’re depressed!” “You’re imagining it!”

“You’re malingering!” “You’re attention seeking!-”

“No I’m not – I have an Ehlers Danlos Syndrome!”

 The Ehlers Danlos Syndromes (EDS) are a group of conditions that are poorly understood, even by many in the medical professions. It is essentially a defect in the production of collagen, an essential component of connective tissue.

Many articles about EDS contain medical terminology that can be difficult to understand. The purpose of this guide is to put the medical terminology in plain language and help non-affected family and friends understand exactly how EDS affects people and their day-to-day lives. The medical terminology is included in italics. Links to web pages are included throughout the article if you want to conduct your own research.

Why are they called The Ehlers Danlos Syndromes (EDS)?

The name of the condition itself is quite a mouthful! Ehlers Danlos Syndrome (Eylerz-Dan loss Sin-drome) is named after the two physicians, Dr Ehlers and Dr Danlos, who first described this group of connective tissue disorders.

What is EDS?

People with a type of EDS will produce faulty collagen. Collagen is essential for healthy connective tissue, which is found throughout the body supporting and connecting the different types of tissues and organs, including tendons, ligaments, blood vessels, internal organs, bones, the blood and skin.

Imagine a healthy person’s connective tissue as being like regular household glue. People with EDS have collagen that is more like chewing gum; stretchy and not very good at keeping things in place.

What causes EDS?

There are a number of different genes responsible for making collagen and connective tissue, so there are different types of EDS depending on which genes are faulty. There are 13 types of The Ehlers Danlos Syndromes

How did I get a faulty gene?

It is possible that the faulty gene may have been inherited from one parent, or both parents, or not inherited at all. It may be that the defect has occurred in that person for the first time. This happens in 25% of cases.

 How I explained it to my 7-year old son.

A carpenter makes a wooden chair. Instead of using wood glue to place the joints of the chair together, he uses chewing gum. Once finished, the chair looks fine. But, as time goes by and the chair is used, the chewing gum doesn’t work very well at keeping the joints together. Without proper glue the chair can begin to get wobbly. I went on to explain that with proper exercise he could help to strengthen his muscles so that they acted like binding around the joints to help support them.

What does EDS feel like?

Having an EDS feels different from person to person, depending on their type, but many describe it as having a lifelong flu. Have you ever had the flu? Do you remember how painful it was having those aches and pains in the joints and muscles? Do you remember how tired and run down you felt? That’s what it’s like for people with EDS only worse and it never goes away. In addition to the daily aches and pains people with EDS also have to deal with very painful headaches, gut issues and then of course there’s the issue of dislocation. Many EDSers can’t go a day without a joint popping out. It can happen simply by stepping off a footpath or picking up a pot when cooking. A lot of people with EDS are also affected by the weather. When it is damp or when the air pressure changes their pain can increase.

How does EDS affect people?

Because collagen is everywhere in the body, there are hundreds of ways EDS can affect people. Any two people with EDS may have very different signs and symptoms, this includes people with the same type. In som,e the condition is quite mild. For others it can be disabling. Some of the rare severe types can be life-threatening.

One of the problems with diagnosing EDS is that many diseases share the same symptoms. As a result, EDS can be easily confused with other conditions and it may be difficult for doctors to recognise. But there are ways to tell if someone may be affected by EDS and need more thorough investigation. Some of the investigations available are listed later.

The most common symptoms of EDS (hEDS and cEDS) are:

  • “Double jointed” – Hypermobility: joints that are more flexible than normal.
  • Loose, unstable joints that dislocate easily.
  • Clicking joints.
  • Joint and muscle pain

In addition there may be

  • Fatigue (extreme tiredness).
  • Injuring easily.
  • Fragile skin that bruises and tears easily. The skin may also be stretchy.
  • Digestive problems
  • Dizziness and an increased heart rate after standing up. (Postural Orthostatic Tachycardia Syndrome or simply POTS for short)
  • Incontinence of urine in women

Digestion.

If food in the stomach doesn’t move through the body to make its way out it may just sits in the intestines and can cause a feeling of fullness, nausea, vomiting, stomach pain, to name just a few symptoms. This condition is known as Gastroparesis. (gas-tro par-eesis).

Nervous System

Another condition than often affects people with EDS is a fault with that part of the nervous system controlling the “automatic” functions of the body; things like blood pressure, breathing, heartbeat, digestion, how hot or cold you feel and the way your organs work and so on. This is called the Autonomic Nervous System. When it doesn’t operate as it should the conditions is called Dysautonomia (Dis-auto-no-me-a). Common symptoms of this are trouble with digestion, dizziness and fainting.

Dysautonomia affecting the heart.

The most common type of Dysautonomia causes dizziness and an increased heart rate after standing up. This condition is called Postural Orthostatic Tachycardia Syndrome or simply, POTS for short.

Some sufferers have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life things like bathing, housework, eating, sitting upright, walking or standing can be very difficult. They may feel dizzy or even faint from doing these things.

What are the symptoms for POTS?

People with POTS experience fatigue (extreme tiredness), headaches, lightheadedness (feeling dizzy), heart palpitations (when their heart beats so hard you can hear and feel it), exercise intolerance (feel ill when exercising), nausea (feeling sick), diminished concentration (hard to concentrate), tremulousness (shaking), syncope (fainting), coldness or pain in the arms, legs, fingers and toes, chest pain and shortness of breath. People with POTS can develop a reddish purple colour in the legs when standing; this is believed to be caused by blood falling down in the body because of weak veins. The colour change subsides upon returning to sitting or lying position.

Can you tell someone has EDS just by looking at them?

The short answer is no. Some may have typically blue sclera (whites of the eyes), they may have translucent skin (see through) and you may even notice how bendy they are. But some people may have some of these things and not have EDS.

Many people with the type of EDS that affects blood vessels (Vascular Ehlers Danlos Syndrome or simply, vEDS) do have some facial characteristics. Notice in the picture below that the people have big eyes, thin nose and lips.

veds_type_poster3_2

Can EDS kill people?

Some people think it can’t but actually, EDS has led to the untimely death of people all over the world. vEDS is considered the most serious form of EDS due to the possibility of the heart or organs tearing.

Many EDSers live a life of constant pain. This pain and misunderstanding from their medical teams, families and friends can make a person feel very sad and alone which can lead to depression and even suicide.

What treatments are available for people with EDS?

Because EDS is considered “rare” there are not many doctors willing to learn about it. Types such as hEDS and cEDS can be somewhat managed through specialised physiotherapy. Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations. Occupational therapy is also useful to help manage everyday life. Pain relief is very important for people with EDS.

EDSers should also be under the care of a Rheumatologist (a doctor who looks after bones and joints), a Cardiologist (heart doctor). There may also be a need for more specialised doctors such as Neurologists (doctors who look after the nervous system) or all of the above plus many, many more. Sometimes operations are required to repair joints that have dislocated frequently and haven’t healed properly.

Do all people with EDS need wheelchairs?

Not everyone will experience EDS the same way, some people can live normal lives and manage very well with physiotherapy and pain relief. Others may need to use wheelchairs or walking sticks to help them get around. Some people with EDS also have Gastroparesis which we discussed earlier and may need to be fed using a tube. Others may only have mild tummy problems. Some people with EDS may have to go to hospital a lot while some may only go to their GP every few months. But, just because one person can live their lives fairly normally, it doesn’t mean they don’t have EDS or that their pain shouldn’t be taken seriously.

Can you catch EDS, POTS or Gastroparesis?

No. EDS and other sub conditions are not contagious. If you know somebody with EDS, don’t be afraid, you’re not going to catch anything from them. So, if you’re avoiding someone with EDS, go make friends with them.

 How can I help someone with EDS?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has EDS and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about EDS and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about EDS. Experts believe that EDS is not rare, just rarely diagnosed.

I will update the Diagnostic Criteria for cEDS, hEDS and vEDS in the coming days.

*Special thanks to my Dad who helped me edit this guide.*

Do you think anything else about EDS needs to be explained? Let me know in the comments!

Z.M

x

 

Teaching our children about consent should start in early childhood

The topic of consent is everywhere at the moment, it is an important social issue that affects each and every person, male or female, no matter their age. While I welcome mandatory consent classes on college campuses, I can’t help but wonder whether we are leaving it too late to begin introducing the topic of consent to the young people of Ireland? Let’s face it; the majority of first year college students are already sexually active. Should these mandatory classes be apart of the secondary curriculum? Absolutely. But as parents I feel it is our responsibility to plant the seed much earlier on in life.

I recently watched Louise O’Neill’s documentary Asking for It? If you haven’t seen it yet, you can watch it here. After it’s airing, I began scrolling through comment sections on social media to suss out what the Irish public thought of rape culture and the issue of consent.

Sadly, I was unsurprised to see so many people claim that Ireland does not have a rape culture. People were either too fixated on the word “culture” or almost literally sticking their fingers in their ears and screaming to avoid dealing with this very real issue. It’s such an Irish thing to do, to sweep it under the carpet, no need to make anyone uncomfortable. We have a rich history of turning our backs on painful subjects. Just look at the Magdalene Laundry scandal, for instance. Modern day Ireland is repulsed with how women up until very recently were treated by the Church. We are also disgusted that as a society we kept quiet. This attitude reflects what we are seeing today with women being perceived within a Madonna-whore complex. No, “rape culture” does not mean that as a nation we condone rape. Not. At. All. Of course the vast majority of people believe that rape is a heinous crime and those who carry out such acts should be punished to the fullest extent. Consent is consent and using excuses means we will never tackle the real issue head on.

We have a tendency to victim blame, not just about rape but also in many other situations. Just look at Kim Kardashian’s ordeal in Paris, for example. The narrative wasn’t about this traumatic event a human being went through but rather, blaming Kim for showing off her very expensive jewellery on social media. That she was “asking for it to happen.” The same thing happens to victims of sexual assault.

“Well if she’s going out dressed like that…”

“She shouldn’t have walked home alone”.

“How much did she have to drink?”

“Sure wasn’t she mauling the face off him earlier on in the night? What did she expect?”

Excusing a man’s (or woman’s) actions because they were drunk and saying “he/she would never do that normally.”

Every time these words are uttered we undermine the actual issue.

Growing up in Ireland, I could not go with friends for a night out without the following lecture chanted at me like some sort of protection spell:

“Stay with the crowd, don’t wonder off alone. Watch your drink. If someone is buying you a drink, go to the bar with them.”

As a young teenage girl, I had never been exposed to rape. It was something I only knew about from obsessively watching Law and Order: SVU. It was something that happened in far away lands, not here in little ole Ireland. Then again, I did live a fairly sheltered life.

But, as I began going out more, I started to understand why my mother gave me the same speech over and over again, each and every single night out. Even today at 29, a mother of two children, I am still reminded by my mother to do all of those things. Years ago I would have rolled my eyes at mum followed by a “yeah, yeah, yeah. OK, Mum.” Now?  I make sure I don’t walk home alone on the rare night I do go out. Or if I can’t get someone to walk home with me, I call my husband for the 7-minute walk home. A lot can happen in 7 minutes.

I recently had a discussion with an older relative about rape culture and particularly, victim blaming. The conversation went something like this:

“Women have a level of responsibility to protect themselves,” the relative said.

In a perfect world, it would be great for women to feel comfortable enough to walk home alone at night. It has been drilled into our heads so much that we shouldn’t put ourselves in dangerous situations but how about we start telling young men before they go out to respect any girl they potentially hook up with. That no means no and not try a little harder to swoon her into submission.

Sexual abuse is rarely ever about sex, it’s about power. Assault can happen anytime, anywhere and the attacker more often than not is someone familiar to the victim. 93% of perpetrators are familiar to their victims.

I responded to this relative with a question.

“If a man is mugged in the street at night. Do you blame the man or the thugs that mugged him?”

This made my relative stop and think.

A few days later we went to the woods for a stroll and some foraging. We separated for a few minutes. I noticed a white van with no windows pull up near me. I looked around to see how many people were around me and checked the laces on my runners were tied properly. My male relative didn’t acknowledge the van, as in he didn’t think twice about it. Women all over the world are on edge. We always have our defenses up. Will that guy cat calling follow me home? Will I arrive home safely in this taxi?

When scrolling through the comments section under Jennifer Hough’s article about rape culture in Cork one comment stuck out for me.

It went something like this:

There have been no reports of rape over the weekend so I question the author’s claim that she saw this happening.

One in four Irish women have experienced sexual abuse at some point in their lives. One. In. Four. That’s almost as common as cancer and yet, why don’t we see it in the media more? Victims of assault fear the trauma of reliving their experience during an investigation or fear of being accused of leading the perpetrator on; that they did something to ask for the attack. According to the Rape Crisis Centre Network of Ireland’s (RCC) 2014 statistics 33% of survivors contacted the police about their assault. According to the Sexual Abuse and Violence in Ireland Report (SAVI), only one in ten sexual crimes are reported in Ireland. Of that one in ten, only 7% secures a conviction. Less than 1% of victims of sexual crime in Ireland get justice.

So, just because we don’t see it in the media everyday, it doesn’t it’s not happening.

Consent is a hot topic and Louise O’Neill’s documentary resulted in the subject being discussed everywhere-amongst friends, on social media and in the news. The end message is we need to teach young men about consent just as we teach women to protect themselves. We are now seeing mandatory classes in collages being taught about consent but should we wait until most young people are already sexually active before we introduce the idea of consent to them?

Just the other day my 7-year-old son was trying to get his 19-month-old sister to give him hugs and kisses. She was shouting no but my son kept trying. At that age of course there was no malice in his actions but something clicked. This is where it begins. I told my son there and then that if his sister didn’t want hugs and kisses and she is shouting no that it meant no and to stop. I want him to understand that now, not when he’s a teenage boy. No means no. We see it all the time, relatives practically forcing children to show them affection. Why are we so pushy for physical affection? Children are not property. We have no right to hit them so why should we force them to hug and kiss us? It is their body. It is their choice. Their feelings about their personal space matter as much as any adult’s.

It all starts in childhood. We need to teach our children that our bodies are our own and nobody, not our parents or siblings have a right to invade our personal space or have forced affection brought on them. Parents often tell their children to let them know if anyone touches them inappropriately. Abuse often starts with uninvited touching, hugging or stroking. If we force affection on a child who clearly doesn’t want it, it can be confusing for them to know when something is inappropriate. Forced affection doesn’t show children we love them, it shows them that we can do as we please with their bodies.

If you don’t believe the idea of consent should be introduced to children just take a look at the figures from the 2014 RCC report:

52% of survivors aged 13 to 17 were subjected to rape

15% of perpetrators were under 18

9% of survivors attending crisis centres in Ireland were children.

Waiting until our children become young adults to discuss consent is too late and the figures reflect this.

Although parents or relatives have no intention of harming a child, nor do they think they are doing anything inappropriate; we are teaching our children that an adult or other person’s want for physical affection is more important than their own comfort and safety. It starts as early as toddlerhood; we are laying the groundwork for behaviours that continue into adult life. Teaching our children that no means no could potentially save them from assault later in life. It could also empower young people to have sex only when they’re ready to.

We don’t see physical interaction amongst children as a problem until it’s too late. They tickle, they force hugs and rarely they mean any harm. But every parent has experienced an occasion where their child has either been subjected to touching they didn’t want or have been the ones to force the affection or tickles. So how can we introduce consent to children without going into too much detail about sexual abuse?

We need to teach our children to ask for permission to touch another person. “Is it okay if I hug you? Or “Can I have a hug?”

This teaches our children to ask for permission and it also teaches them to think about their actions before they do them.

We need to teach our children that consent can be taken away too.

Adults know all too well, especially parents that we have days where we feel “touched out.” Kids have those days too. They may have been very affectionate and willing to accept affection the day before but they are well in their rights to tell someone that they don’t want to be touched today. This maybe confusing for other children so it is vital that we show them that it’s OK to change your mind.

A child should never be forced to show affection to another person.

It is a common occurrence that children are told, “go give Nana a hug” or “give Aunty a kiss”. Children are eager to please so they may oblige but that shouldn’t be the case. No matter how familiar your child is with someone, he/she should feel comfortable enough to say no. Given that 93% of cases involve a person the victim is familiar with, it is important that we validate our children’s feelings and respect their decision. Under no circumstances should you guilt a child into giving you affection. Don’t pretend to cry or be sad. So many of us are guilty of this. I know my husband and I have been guilty of this. Humans need touch, we are social creatures but it isn’t really affection if you force or guilt a child into it is it?

Not saying no doesn’t mean yes.

As discussed, children are eager to please so they may do something they don’t really want to do to please a friend, teacher or family member. You may think your own child has no problem saying no but they may not be so forthcoming with someone other than you. Our children must also learn just because they don’t hear a resounding no that it means they can go ahead with that hug or kiss.

Practice what you preach.

Lead by example. Children imitate what they see in their day-to-day lives. If they see Daddy (or Mommy) force affection on to one another, the idea that it’s OK to do that is solidified. Many couples will force a hug or a kiss a form of tomfoolery and no there is no ill intent but still, it is important for us to show our children that we should respect everyone’s boundaries.

Further reading and helplines:

http://www.rcni.ie/wp-content/uploads/RCNI-National-Stats-2014.pdf

Rape Crisis Centre helpline:

1800 778888

or see the website www.rapecrisishelp.ie.

Until next time,

Z.M.