I spoke with some fellow EDS zebras about some of the down right crazy things they have heard from health care professionals, friends and family about their condition. Comment below if you have anything you’d like to add to the list.
1. You have EDS because you’re vaccine injured.
No. Just no. A vaccine isn’t going to alter my genes. Shoo! EDS is genetic. GEN-ETIC.
2. You have EDS because you’re possessed.
Seriously. This came from a chap who works in my local takeaway. Offered to make me herbal blends to cleanse my soul. Thanks, but no thanks, mate. Stick to making pizza, k?
3. You obviously have Lyme disease. That triggered your EDS.
Yes, there are some overlaps with EDS and Lyme but the latter isn’t going to cause your collagen to magically turn into a chewing gum like consistency.
4. You have EDS because you’re stressed.
I was told the stress of my wedding caused my EDS. If that’s true then EDS must be far more common! We should all stay single. Job done.
5. You’re husband is a lucky guy.
*insert pervy wink here* Shockingly, this came from a Doctor!
This is the extend of my bedroom antics, Doc. Seriously, I’m more likely to pop out a hip than to climax.
6.You’re sick because you’re in a bad relationship
This was in the Doctor’s office and my husband was sitting right next to me. The only bad relationship here is with this Doctor.
I mean, talk about awkward. If a Doctor was genuinely concerned about the patient, wouldn’t they wait until their patient was alone? Nobody is going to admit they are in a bad relationship in front of the person they are in a relationship with. Anyway, the point is martial issues are never going to cause a person to dislocate a joint.
7. You’re too young to be sick
Yes, because that’s how chronic illness works. You wonder if these health care professionals obtained their degrees from the bottom of a cereal box. Do you even science, bruh?
I’m too young? Hold on a sec while I tell my body that I’m not actually 90 years old.
8. You’re too short to have EDS
I think you’re confusing my condition with Marfan Syndrome.
9. A holy man once surrounded my hospital bed with his followers they started to chant and pray.
Well, that’s just creepy.
Here, while your at it, could you pray for me to win the lottery so I can pay for my very expensive medical treatment? Oh it doesn’t work like that? Silly me.
10. Your son has EDS because you’re a bad parent.
Like, what the actual F?
The child’s mysterious problems are from his mother yelling at him and letting him get away with too much all at the same time. This was said by a paediatric consultant!
11. Someone assumed because I was in a wheelchair that I was mentally affected.
I was seen in the wheelchair while being pushed by my husband and this old man saw me in the chair and automatically thought I had an intellectual disability. We had our dog with us and looked at me and said (in baby talk voice, no less) “is that your cat? Hah?! Is that your cat? What a lovely cat hah? HAH??!”
I just looked at him smiled and said nicely “yeah funny looking cat, no?! The poor man looked shocked. He just said, “have a nice day” and skootled off quickly.
What do you do in a situation like that? Laugh? Cry? Both?
Has any thing like this happened to you? Let me know in the comments!
Share this with your friends and family to help educate them.
So, I’m sitting on a plane at Heathrow airport. As I stare out the window and listen to the rumblings of the engines preparing to take us back home, I reflect on the last few days.
I have been running on adrenaline, will power and strong cups of coffee to let my family enjoy the experience of everything London has to offer. I know they wouldn’t have gone sight seeing if they knew just how unwell I was. I can’t hide it now though. My pelvis has separated, which it does every few days or with exertion. My wrist popped out and is now painfully bruised. I am emotionally and physically drained.
We arrived in London on Tuesday evening. Weary after our drive from Cork to Dublin, I was looking forward to getting to our hotel in the Premier Inn Earl’s Court and hopping into the bath for a soak. Ollie Pops N’Clicks had other plans..
In addition to inheriting all my wonderful genetic gifts, she also inherited my inability to travel without some form of sickness cropping up. Yup. Right there on the packed tube, close to me in the sling she vomited. And I mean vomited. Like ‘Team America’ vomited. It just kept coming! How could someone so little bring up that much puke?
The smell. Christ. Just what I needed. I look over at my husband only to see him laughing. Then everybody else in the tube noticed what happened and began to laugh too. Frickin’ hilarious, lads.
We hopped off the tube so I could clean myself up as much as possible. We eventually made it to the hotel in one piece, just. Ravenous, we dropped off our bags, got washed up and went to the restaurant for a pleasant dinner.
I didn’t sleep so well that night. The next afternoon Bendy Boy and I would be meeting the Professor Grahame. I met him once at a conference in Cork. He was just as sweet and gentle as I had remembered. The Professor knows all too well the struggle Irish zebras face, almost total abandonment from our own Government and healthcare system. No specialists and the majority of tests needed are simply unavailable. We don’t even have an upright MRI machine.
After an examination and a very long chat, the Professor confirmed Bendy Boy’s diagnosis of EDS Hypermobility Type. It was also noted that the six year old shows signs of Postural Orthostatic Tachycardia Syndrome. When Bendy Boy stands up, his heart rate rises and his feet pool with blood. I was shocked to learn of the POTS signs as he has never complained of feeling dizzy except when he gets out of the bath. I was surprised I didn’t notice the pooling.
The Professor seemed impressed with my knowledge and understanding of medical terminology. When there are no experts available to you, you have to become your own expert.
Here is an excerpt from my own medical report:
“On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale her shoulders and hips (borderline) are also hypermobile, as are her feet which flatten and pronate on weight bearing. There is a non-significant 2° scoliosis on the Bunnell scoliometer, but no other features of a marfanoid habitus. Her skin is soft and silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are numerous thin scars from knee scrapes acquired in childhood and similar over her elbows. Striae atrophicae were first noted by her at the age of 18, and she has minimal striae gravidarum despite having had two full-term pregnancies, a pointer to EDS. Gorlin sign, ability to touch the nose with the tip of the tongue is positive, and the lingual frenulum is rudimentary, both pointers to EDS. She scored very highly (25/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. Her blood pressure lying was 124/84, pulse rate 66; standing 124/84, pulse rate 80. This rise of 14bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS. The evident pooling of blood in her toes on standing is further evidence in favour of PoTS.
On the basis of the clinical findings I have formed the conclusion that Yvonne is suffering from a heritable disorder of connective tissue, the Ehlers-Danlos syndrome hypermobility type, a diagnosis that was established by Dr Mulcahy in 2013. I explained the nature of the condition to her, in particular its genetic basis and the vulnerability it confers on soft tissues to the effects of injury and overuse. In her case it has resulted in longstanding widespread joint and spinal pain. Since the time of her first pregnancy she has suffered a secondary chronic pain syndrome, a frequent occurrence in this situation. It is likely that her bowel symptoms represent an EDS-related intestinal dysmotility, and almost certainly she has PoTS.
There is a concern about the possibility that she might have craniocervical instability on the basis of left-sided weakness, headaches, and paraesthesia in her arms and legs. In addition she feels that her head feels too heavy for her neck. With this array of suggestive symptoms I have agreed that we should proceed to an upright MRI examination, and I will be requesting this at the Medserena Upright MRI Unit for her to have one on a future visit.”
And Bendy Boy’s report:
On examination there is evidence of widespread joint laxity with a hypermobility score of 8/9 on the hypermobility scale. Outside the scale his shoulders, cervical spine, hips, fingers and big toes are all hypermobile, as are his feet which flatten and pronate on weight bearing. There is a non-significant 3° scoliosis on the Bunnell scoliometer. Other features of a marfanoid habitus include a pectus excavatum, and hand-height and foot-height ratios both elevated to within the marfanoid range. I interpret these findings as indicating an incomplete marfanoid habitus, which may become more obvious as he completes his adolescent growth spurt. This should not be taken to imply that I feel he has the Marfan syndrome as the habitus is widely distributed throughout the family of heritable disorders of connective tissue. His skin is characteristically soft, silky and semitransparent, and shows increased stretchiness in the phase of taking up slack. There are no paper-thin scars of note. Gorlin sign, ability to touch the nose with the tip of the tongue, is negative. The lingual frenulum is present (normal). He scored moderately highly (12/30) on our checklist of symptoms compatible with autonomic dysfunction, known to be a common feature of EDS. His blood pressure lying was 96/53, pulse rate 75; standing 102/62, pulse rate 85. This rise of 10bpm on change of posture is suggestive of postural tachycardia syndrome (PoTS), the most frequently encountered form of dysautonomia seen in patients with EDS.
On the basis of the clinical findings I confirm that Alexander shares his mother’s phenotype and diagnosis.”
While I was being examined, Ollie Pop (16 months) decided to stand up on her own for the first time! And I missed it. Thank You, EDS!
Receiving the confirmation of EDS HT and the noted symptoms of POTS given by Professor Grahame will hopefully bear weight in accessing services here in Ireland. Although, I won’t hold my breath. My GP was happy to hear that I took the plunge going to the UK and she’s very interested in my case. It took a long time to find a GP that genuinely cares. While a weight has been lifted knowing that I definitely have EDS and haven’t been misdiagnosed for the hundredth time, there is a fear. The idea of having cervical instability or Chiari freaks the sugar out of me. This last trip cost roughly 5,000 Euro. The next trip will be double that again. If Chiari is present and significant it may mean I will have to take a trip to the US to have surgery. We will just have to wait and see.
Coming home to Ireland, it is wet and windy. It’s miserable. The weather here reflects how I feel about Ireland and it’s healthcare system.
Now that I’m home I don’t have access to the fantastic services and more importantly the compassion I felt in London. I felt so at ease.
I am fundraising to get back to the UK in the new year for further testing. I will give details of these in Part 2 along with the rest of my tale. If you can donate anything at all, just click on the link below. Even sharing our story would be a massive help.
What’s a “spoonie”? A spoonie is a person who suffers from a Chronic Illness. It is derived from Spoon Theory. When you are ill every. single. day, you need to decide what’s important. Do I shower or clean the bathroom? Although it might be a no brainer that you obviously choose the shower, for many of us, we have to forgo the shower otherwise the house will look something like this:
When it comes to actually doing the laundry, it can actually be quite tough on the body with all the bending down to grab clothes out of the machine and reaching up to hang them on the washing line. To stop me bending down so much I bought a laundry basket with folding legs. I also bought a device that helps me fold clothes beautifully. I suffer from DCD like symptoms as does my son due to our EDS.
Top tip: Mountains of clothes stacked on chairs around the house? Everytime you do a load of laundry check the sizes, condition and try to remember the last time you wore it. Is it too big or too small? Put it in a bag to pass along to a friend or charity shop. Does it have holes in it? In all honesty, are you going to repair it? Bin it. Have you worn it in the last 6-12 months? If the answer is no, put it in the pass along pile. This will save you doing “the big clear out”.
This is something everybody hates doing so can you imagine what it’s like for someone who may end up in bed for a week by doing simple cleaning tasks?
Hoovering and mopping the floors is a massive task for spoonies and can often lead to injury. Lugging around hoovers and buckets of water for the mop can often mean I dislocate or pull something. Hence why I don’t do the floors often! We did invest in a steam mop that can also be used to clean surfaces. I do the find the X5 to be a bit heavy so if anyone knows of a lighter model, let me know in the comments! What I particularly like about the steam mop is that you can clean without the use of chemicals.
I haven’t bought one yet but I’m dying to get a cordless hoover from Dyson or a one of those rob hoover/mops. Other spoonies have recommended them to me. Come on, how awesome is this?!
Top tip: Fill one of these guys with 1 part dish soap and 1 part white vinegar. Keep it in the shower and wash down surfaces before you get out of the shower or while you are conditioning your hair. Simples!
If your shower or bath has mould growing around the rubber edges you can soak some cotton pads in bleach and place it on the mouldy areas. Leave them there for a few hours and then wipe clean. The rubber areas will be white again!
If you have kids and are chronically ill, keeping the house tidy can be a full time job. We live in a two storey house which makes things that bit more difficult. Recently, I bought two little blue baskets. When I am tidying up I go to each room and put things in the basket that don’t belong in that room. Then, as I go from room to room I put the things where they belong. If you have visitors coming around and you need to tidy quickly-just fill up the baskets and leave them to sort later.
Top tip: This one is particularly handy for the little ones. Buy a timer. Each day set it for 5 or 10 minutes-whatever you can manage and for those few minutes do a little cleaning or tidying. It’s amazing what you can get done in such a small amount of time!
Corrie’s Cheryl Houston is probably one of the most famous people who suffers from Hypermobility Ehlers Danlos Syndrome. Cherylee has done fantastic work raising awareness about the condition through EDS UK. She is Coronation Street’s first full time disabled actress.
Gary ‘Stretch’ Turner can stretch the skin of his stomach to a distended length of 15.8cm or 6.25in due to Ehlers-Danlos Syndrome.
He is even in the new book of Guinness World Records!
UK Singer Myleene often shows off her hyper mobile elbows. She can even play the piano backwards!
Various articles state that Kelly suffers from hypermobile hips that frequently pop in and out. Reports even suggest that the fashionista’s hips pop out unexpectedly causing her to fall over. During her stint in Dancing with the Stars she said: ”I’m double-jointed everywhere, I think that’s why I’m so accident prone. Tight jeans and high heels equals one of my hips popping out and my face on the floor. As a result of this curse, I can fall perfectly. I turn it into a dance move.” (Xposé.ie)
Ouch! By the sounds of it, Kelly suffers from a hypermobility syndrome.
The pint sized Columbian singer isn’t shy about showing off her tricks. She can pull her legs over her head which “really freaks people out”.
A Few Honourable Mentions
It is believed although not proven that historical figures such as Abraham Lincoln and Anne Frank suffered from connective tissue disorder,Marfan Syndrome.
Abraham Lincoln was 6″4. The president’s lanky build, his long, thin face, and his enormous hands and feet, sparked the notion that Lincoln might have had Marfan Syndrome. Geneticists and historians have debated this idea since it was first proposed in the early 1960s.
Anne Frank, the famous German diarist who hid in her attic during World War II is believed to have suffered from Ehlers Danlos or some other Connective Tissue Disorder such as Marfan Syndrome. When talking about P.E in her diary, she says:
I’m not allowed to take part because my shoulders and hips tend to get dislocated.
Anne’s facial features also suggested she may have suffered from EDS. Her large eyes, thin nose and lips are common features in EDS sufferers.
There is a wide belief amongst medical professionals that both Elizabeth Taylor and The King of Pop, Michael Jackson both had EDS.
Dr Diana Driscoll explains in the video below the reasons she believes Liz Taylor had EDS.
Interestingly, Michael and Elizabeth were friends. It is known that Michael suffered from chronic pain and insomnia, both of which are common symptoms of EDS. In addition to his hypermobility, it is possible to assume the late singer battled with the syndrome. Watch below from 16:40. Professor Rodney Grahame, one of world’s leading expert explains why he believes Jackson had Ehlers Danlos Syndrome.
While we have mentioned syndromes such as Marfan and EDS, it is important to note that 10% of the population are hypermobile and will not suffer from pain or complications. Many people with hypermobility live perfectly normal lives, some even use their bendiness to their advantage by taking part in Ballet and Gymnastics.
Have you spotted any bendy celebs? Hit comment and let me know!
I was asked to start a blog by a few fellow zebras to share my experiences of being a mom with a chronic illness. Well, here I am. Before I get into all that though, it is important that you know my backstory, how I got to this point. I’m sure many of you can relate to my story, my journey to diagnosis.
In 2012, I was interning at the Cork Independent newspaper. During my time there I happened to take a liking to writing the health section of the paper. My parents were both nurses and my sister, also worked in healthcare so while I didn’t strictly follow the family tradition, I still had a keen interest in health. That year I decided I was going to enter the European Health Journalism Awards. The theme I chose was rare diseases. So, I contacted the Genetic and Rare Diseases Organisation (GRDO) and asked to be put in touch with a rare disease sufferer. Later that week I interviewed a woman about her disease, Ehlers Danlos Syndrome (EDS). Little did I know that the answers I has been searching for about my own illness had landed right on my lap.
There is an old saying within the medical profession: ‘When you hear hoofbeats, think of horses, not zebras’. Dr Woodward, an American professor at the University of Maryland would instruct his medical interns to practice as the phrase suggests. You see, horses are common in Maryland, while zebras would have been relatively rare during the 1940s. So, one would assume that, upon hearing the sound of trotting hooves, that a horse would be the most likely explanation. I however, am a zebra.
My symptoms started as a child but got really bad by the time I was 14. Gradually, my knees began to hurt, especially when it was cold. By 16, it was unbearable. A few years later, the pain spread to my hips and ankles. The joints began to make popping and clicking noises. Frustratingly, blood tests for arthritis and x-rays all came up clear. Then I began to have problems with my stomach and experiencing fatigue. In college, I was vomiting almost everyday for a year and napped frequently. The fatigue hasn’t stopped to this day. A colonoscopy and endoscopy came up clear but my GP said it was irritable bowel syndrome. Some days, my abdomen swells so much, that I look pregnant. After my son was born five years ago, I had no choice but to fight the fatigue. I am not anemic, but as the months have turned into years, the tiredness has become overwhelming. The smallest of chores around the house are exhausting for me. Some days, I don’t even have the energy to get dressed and face the world. People commented on this and called me lazy. Without a diagnosis, I couldn’t give them a credible answer as to why I was sitting in my pajamas in the middle of the afternoon.
I was living in constant pain for years, feeling exhausted every single day and life on a day to day basis was unbearable. I felt as though I was going crazy. All tests, scans and x-rays were coming back negative and my doctors came to the conclusion that I was depressed, that my physical pain was a manifestation of something that was purely emotional.
Yes, pain and sleep disturbances can be symptoms of depression. Of course by that point, I became depressed. These doctors were the experts and who was I to argue? I was put on nearly every single anti depressant available on the Irish market at one point or another. Still, the pain and fatigue continued, so after eight years taking these pills, day after day, I was numb, floating through life. I felt useless as a mother, wife and friend.
Of course, I did have my good days, especially during the summer when the weather was warm and my joints didn’t hurt as much. For the past two years, the joint pain has spread to affect my hands and wrists, my back and neck too. If I move a certain way, a joint may slide out and back in again. But things changed for me in 2012 when I interviewed that girl. For the purpose of anonymity, we will call her Anna.
Anna has a condition called Ehlers Danlos Syndrome (EDS). EDS is a Connective Tissue Disorder. People with the condition produce faulty collagen, which is the glue that holds the body together. In EDS, this ‘glue’ is more like chewing gum and causes the joints to be loose, often resulting in dislocations. However, collagen is present throughout all areas of the body and therefore EDS is a multi-systemic condition with secondary conditions present in most cases. When Anna explained her symptoms, I wondered did I have something similar? I was so touched by her story and felt connected to this young woman that we kept in touch. In the meantime I was put on a public waiting list to see a rheumatologist. But then, in late 2013, I was speaking on the phone and then everything started to go black; I felt hot, my heart was racing, I felt weak. I ran to the bathroom to lie down on the cool floor. This gave me such a fright that I decided I wasn’t prepared to wait two years to see a public consultant. I had to know what was wrong with me. I was going to get answers.
I organised a private appointment with a physiotherapist who confirmed that I was hypermobile. The pieces of the puzzle were coming together. Then I arranged an appointment with a rheumatologist in Cork, with an interest in EDS and Hypermobility Syndrome. Two weeks later, the doctor confirmed that I had Ehlers Danlos Syndrome. I cried with relief that finally I could put a name to what I had. After a decade of tests and scans I had taken the reins myself and finally got my diagnosis with just two appointments. The majority of doctors in Ireland are unfamiliar with EDS and there are no specialists available here in Ireland. If there were more awareness and training, I may have been diagnosed much earlier in my life.
After my diagnosis, I began weaning off the anti depressants. That was two and a half years ago and I haven’t looked back since.
I was on a high the day I got my diagnosis, but the next I had to face the harsh reality that I have a rare, lifelong and progressive disease. Luckily, my EDS is quite mild compared to some of my friends and hopefully more awareness will mean better treatment for me, and my fellow zebras in years to come. The biggest help for me through all of this has been Facebook and speaking to other people with EDS. They are enormously supportive and there is a real air of solidarity. Everybody is supportive and no matter how trivial I thought my problems were in comparison, the support has been immense. Hopefully, together, we can raise awareness about this debilitating disease and bring about an improvement in the services available especially for our children.
My son AJ is six years old. In 2014 he was diagnosed with Hypermobility EDS. I had him seen by the Rheumatologist that diagnosed me. AJ bruises very easily and I worried that teachers might question whether he was being abused. Sadly, this is not an uncommon fear amongst the EDS community. Children have been known to be removed from the family home as their parents are suspected of abuse. Thankfully, his school has been extremely supportive, even helping us organise an SNA for him. AJs’ EDS is extremely mild at the moment. But, he struggles in school, especially with concentration and writing. This is common with EDS kids. He has sensory issues, which makes it extra hard for him. His pelvis is also unstable so sitting for long periods is impossible for him. A care plan has been put in place for him in school next year. Alex is a happy child though and has never had a severe injury, as of yet, for this, I am thankful.
The latest addition to our family is our little Olliepop, our 9 month old daughter. Obviously, she hasn’t received any diagnosis yet. But, deep down, I know she has EDS. Her sclera are extremely blue, a sign of EDS. The Public Health Nurse also noticed how flexible Ollie is, so much so, that she has been referred to physiotherapy. She suffered her first dislocation at just 7 months old. I fear for my little girl and what may happen to her. But, having a parent with the same condition will work to her advantage. She will be believed. She will not go decades wondering what the matter is.
I am here watching you both sleep. It’s 5.06am and I’m awake because I’m in pain. It’s peaceful here with only the sound of you breathing, the cat purring at your feet and the tapping of my fragile fingers on the keyboard. As I watch over you both, I think of all the things I wish and hope for you and your futures.
I wish that medical professionals will believe you when you tell them there is something wrong. I wish that when you tell your teachers you’re not feeling well, that you will be believed. I wish that when you tell me and your Daddy that you need help, that we can do that and to the best of our ability.
I hope that as you grow up, that we can do everything in our power to prevent you from experiencing the type of pain and anguish that I go through almost every day. I hope that I can be a good enough mom for you both. Most of all, I hope that you won’t grow up to hate me because I was too sick to play or get up out of bed. I hope that you will understand that I didn’t get up out of bed because I was saving my energy to do something fun with you another day.
I pray that you will grow up and live a normal life. I pray you will get the best education, in life and in academia. I pray you will find a job you love but never feel like it is work. I pray you find love, with man or woman and they will accept you with all your flaws and imperfections. I pray that you appreciate them, as I have appreciated your father for loving me, despite the difficult days. I pray they treat you the way your father has so graciously treated me.
I know that should you experience any of the obstacles that I have faced, you will be far more equipped to deal with them than I ever was. I know you will be strong and determined as you have been in everything you do so far. I know that you will have days where life is just too damn hard, that there seems to be no end to the uphill battle but you will continue on. I know that when you should decide to become parents yourselves that you will know this guilt that I feel now, knowing that it was you who passed on these faulty genes. But, please remember; this is not your fault. You cannot control your genes as I could not control mine.
You begin to stir next to me now. No doubt you are looking for what you affectionately call “mama” as you nuzzle at my chest. And you, my love, at the end of the bed sighing in your sleep as if your dreams are giving you relief.
I want you to know that I love you, deeply and unconditionally. I hope that you know that I’m trying everyday to be the best mom I can and I pray that you will live a healthy, happy life.
Breastfeeding has become such a touchy subject for the last few years and when ever it is discussed it inevitably becomes the breast vs bottle debate. Isn’t anybody else tired of this?! I blame the media (yes, I’m a journalist) because they have instigated ‘mommy wars’ in an attempt to generate more likes and followers on social media. I’m not here to debate ‘whether public breastfeeding is acceptable’ or ‘how long is too long?’ If you must know, I believe in breastfeeding to natural term which by the way, is anything up to 7 years of age. Will I feed a 7 year old myself? Probably not. Will I judge a mother who does? No. Her child, her business.
Anyway, this week I am offering some words of advice to chronically ill moms who wish to breastfeed or are thinking about breastfeeding. This is just touching on some points, if you want me to go into detail about anything, feel free to email me firstname.lastname@example.org
1. Health benefits for mom
You’re chronically ill. God forbid you end up with any other ailments other than the crappy lifelong illness you are living with. Breastfeeding reduces a mother’s risk of developing certain cancers, diabetes as well bone conditions such as osteoporosis.
2. Health benefits for baby
“Exclusive breastfeeding for six months has many benefits for the infant and mother. Chief among these is protection against gastrointestinal infections which is observed not only in developing but also industrialized countries. Early initiation of breastfeeding, within one hour of birth, protects the newborn from acquiring infections and reduces newborn mortality. The risk of mortality due to diarrhoea and other infections can increase in infants who are either partially breastfed or not breastfed at all” (WHO)
If your condition is genetic, like mine, you may wonder whether it is worth breastfeeding at all. Absolutely, it is. Again, breastfeeding reduces your child’s chances of developing a massive range of illness and chronic conditions such as diabetes. Breastmilk is the perfect food for your baby. Anything else compromises their gut flora and may lead to problems such as coeliac disease and other food allergies.
3. Breastfeeding is the easier, less exhausting option
The first six weeks are tough and you feel like you are just feeding all day long. This is totally normal and necessary. For the first six weeks your baby is trying to establish your milk supply. Best thing to do is just sit back, relax and enjoy the time with baby. Think about how exhausting it would be if you had to prepare formula, sterilise, wash bottles etc. And the night feeds, Jeez! Having to get up in the middle of the night to make a bottle and wait for it to cool down, that is exhausting. I formula fed Bendy Boy and honestly, I was like a zombie.
After the six week mark your supply will settle and you will have a couple of hours between feeds to go about your day. Cosleeping is also really great for sick breastfeeding moms who need the extra sleep (if you are on medications that make you sleepy you will not be able to cosleep) Baby is close by that you can just pop boob in his/her mouth and you can drift back to sleep. Studies show breastfeeding and cosleeping moms get more sleep.
4. It’s free and always ready to go.
If your condition has caused you to give up work, you might not have the funds to buy formula every week. You’re talking on average a tub of formula is €12. That’s €624 a year! Never mind the cost of bottles, sterilisers and electricity costs.
5. You can breastfeed on medications
I am a massive fan or Dr Jack Newman. He has been a Godsend for me when it comes to getting information on medications. Many misinformed health care professionals will tell you that you can’t breastfeed while on medications. This is not true at all. I am taking Tramadol and and Midodrene for pain and low BP. If you’re not sure about your own medications, check out the Lactmed app for android and iPhone, contact the Breastfeeding and Medications Facebook page or check out Wendy Jones’ factsheets on her website.
Paediatrician Dr Jack Newman, IBLC says:
“There is almost no drug that requires a mother to interrupt breastfeeding. The real question is which is safer for the baby: Breastfeeding with tiny amounts of drug in the milk (and it is almost always tiny) or formula? Clearly, in the majority of cases it is safer for the baby to breastfeed.”
Breastfeeding doesn’t have to be all or nothing. Every drop counts. If you can’t breastfeed yourself, the World Health Organisation recommends:
Milk from a wet-nurse, or
Milk from a milk bank, or
Breastmilk substitute (formula) fed by cup.
I expressed for my daughter for the first six weeks as she was severely tongue tied. I also used donor milk on a couple of occasions.
6. If you’re having trouble, go to a lactation expert
You go to see a cardiology consultant for your heart, a rheumatology consultant for your bones and joints so why would you not see a lactation consultant for breastfeeding? Breastfeeding is a learned skill and all mothers need help in the early days. Sadly, there is a huge lack of knowledge amongst health professionals when it comes to breastfeeding. Most health care professionals have little to no formal training in lactation (even a lot of midwives provide inaccurate information) so you will need to get in touch with an IBCLC or Le Leche League. Breastfeeding should not hurt and despite what some doctors (and the Fed is Best Foundation) might say just 1-2% of women will not produce enough milk. There are even some who say that some babies “just don’t the like milk” or that their baby is allergic to breastmilk (this is extremely rare and it’s far more likely your baby has a cow protein intolerance). Even if your supply is low, there are many things an IBCLC will help you to do to get your supply up such as a supplementary feeding system. If you are find breastfeeding difficult, do contact an expert as soon as possible to avoid further problems. There are so many myths out there so it’s important to talk to someone with extensive training.
If you have any questions, please feel free to comment below. I will do my best to help.
Until the next time,
One mother's experience of life with Ehlers Danlos Syndrome