Category Archives: Rare Diseases

You just can’t be sick

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Having any disability is difficult but for those who suffer from invisible conditions, it is a constant uphill battle. In addition to fighting their own conditions, they must also face discrimination and feel like they have to prove they are in fact, genuinely disabled.

As the name suggests, invisible disabilities are quite hard to detect, just by looking at someone. You can not tell if someone suffers from migraines, depression or diabetes just by looking at them. While you may have the best intentions, some of the following statements should never be said to someone with a chronic or invisible illness

“But you don’t look sick/But you look so well.”

While you may be trying to make the sufferer feel better, it can often come across as being accusing. Bear in mind that people with invisible illnesses probably hear this on a day-to-day basis. Not all illnesses are obvious and quite often the sufferer just puts on a brave face or you may have caught them on a good day.

“It could be worse, you could have cancer.”

Of course things could be worse, but if the sufferer has a chronic illness that doesn’t have a cure, they will be facing this condition for the rest of their lives and for some, it doesn’t get much worse than that. As for the cancer reference, just don’t..cancer goes one way or another, the person you are talking to may never be cured or won’t die as a result of a condition. Chronic illness means a life time of suffering.

“You should try this, it worked really well for my aunt, uncle, grandfather etc”

Oh this one really grinds my gears…
Again, you may mean well but unless you are a medical professional, or you also suffer from the condition, keep it to yourself. Anybody who suffers from a chronic or invisible condition wants to get better and have probably tried all treatments available to them. The Paleo diet isn’t going to fix faulty genes, or cure depression. And no, vaccines did not give me EDS!!!!

“It must be great not having to work”

My response is usually “😑”

Most people with chronic disabilities would do anything to live a normal life! Everyone wants to be independent and to have a good income to support their families. Being stuck at home all day can also effect a person’s mental state.

“You just need to exercise more”

Of course everyone should be doing some form of regular exercise. Physiotherapy and other exercises are hugely beneficial and important to maintain ones health but, going for a run or taking up a dance class can often make sufferers feel worse, especially if they have something like Autonomic Dysfunction.

“You are too young to be sick”

NEWSFLASH…
You don’t have to be elderly to be sick! You can become ill or stressed no matter what your age. Illness or disability isn’t age-dependent. Saying this to someone with an invisible condition can often make them feel self conscious about their inability to do normal, everyday tasks such as getting out of the house to get the groceries.

“It is all in your head”

Of all the things people with invisible conditions hear, this is undoubtedly the most dangerous. Sadly, not only is it heard from friends and family, sufferers can often hear it from their doctor. It is not uncommon for people suffering from physical disabilities to suffer from mental illness, and all because they were not believed.

But what can be the worst thing of all for someone with an invisible disability is for them to hear nothing at all. Someone who comes across as being totally disinterested, ignores the subject or just nods can be the most hurtful of all.

Things you should say to someone with an invisible or chronic condition.

“I believe you”

This can often be the nicest possible thing someone with an invisible condition will hear. Too often, sufferers will spend years battling with health care professionals to find an answer. When they finally hear “I believe you,” a huge weight will lift from their shoulders.

“I looked up your condition online”

Someone who takes the time to learn about a condition is very much appreciated amongst those with disabilities.

“How can I help?”

Taking a person shopping, for a cup of coffee or bringing them to their appointments can make all the difference. Sometimes someone with a chronic condition doesn’t leave the house for a long time, or misses a lot of school or work.

Adding to the difficultly of their illness is the feeling of being forgotten or left behind. Even if you can’t take time out of your day, a text or a phone call letting them know you are thinking of them may be a small act for you, but a big gesture for the recipient.

“I’m here”

Two very powerful words but, don’t say it unless you mean it.

I hope people who hear these things on a daily basis won’t feel so alone. Sadly, we will face ignorance in our lives. We will come across some moron who harasses you because you have a disability badge on your car. It’s inevitable. Chin up. We may be ‘invisible’ but we still have our voices to educate and create awareness.

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To all the people out there who are skeptical of one’s illness, remember this; never judge a book by its cover. As cheesy as it sounds, it’s true.

So until next time,

Take care of you

Z.M

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Breastfeeding for the Chronically Ill-What you need to know

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 hello@thezebramom.com

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.

 

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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,

Z.M

Rare Disease Day 2016

How appropriate that this year’s RDD falls on a leap year! This year’s theme is ‘Patient Voice’. Ironically, this theme could have two meanings as SO many of us have been patient. Patient waiting for treatment, waiting for a cure and waiting for acknowledgement. Acknowledgement from friends, family and health care professionals.

There are approximately 7,000 different rare disease worldwide. Rare Diseases make up more people than of those who suffer from cancer and AIDS combined yet, there is very little available to us in regards to health care.

In Ireland, we are still waiting for the Rare Disease plan to come into full effect. Something that should have been implemented back in 2014. Here, people with rare diseases are simply left to rot. Here I have linked an article I featured in not long after receiving my diagnosis of EDS.

I have always taken advantage of RDD and other international dates to highlight the plight of those with EDS. Here is what I organised for last year’s Rare Disease Day:

Here is some more information about the upcoming Rare Disease Day on 29 Feb from the official site:

Slogan: Join us in making the voice of rare diseases heard

Rare Disease Day logo
2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day.

On 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.

The Rare Disease Day 2016 theme ‘Patient Voice’ recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

Patients and patient advocates use their voice to bring about change that:

Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels.
Increases and improves rare disease research and orphan drug development.
Achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases.
Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
Helps to reduce isolation sometimes felt by people living with a rare disease and their families.
Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world.

The patient voice:

Is stronger when patients receive training so that patient advocates are equipped with the skills and information that they need to be able to represent the patient voice at the local, national and international level, within and on behalf of their patient organisations.
Is vital because rare disease patients are experts in their disease. In situations when there is often a lack of medical expertise or disease knowledge because a disease is so rare, patients develop expertise on treatment and care options. With this expertise, the voice of a rare disease patient is often more inherent to the decision-making process regarding their treatment or care options.
Is increasingly present and respected in the medicines regulatory process, during which patients bring real-life perspective to the discussion. This voice needs to be encouraged to become stronger all along the life cycle of the R&D process, from the early stages of development of a medicine, right through to when the medicine is in use in a wider population of patients. This will help to ensure that medicines are developed more efficiently and in turn will result in patients accessing more, better and cheaper treatments at an earlier stage.
EURORDIS, whose mission is to be the voice of an estimated 30 million people living with a rare disease in Europe, supports patients to make their voice stronger through various initiatives and activities, including:

The EURORDIS Access Campaign, which invites anybody living with a rare disease to voice the difficulties they experience accessing treatment or care through a questionnaire.
The facilitation of the participation of patient advocates in numerous scientific committees and working parties at the European Medicines Agency and beyond.
The EURORDIS ExPRESS Summer School, aimed at empowering patient representatives through training in the areas of clinical research, regulatory affairs and health-technology assessment.
The EURORDIS Patient Voices Programme, created to collect patient opinions on transversal topics and include them in the policy and decision-making process and other regular consultations with patients.
Rare Diseases International, the global voice for rare disease patients.
RareConnect, the online network of rare disease communities that provides a forum for people living with or affected by rare diseases to voice their experiences and meet others living with the same rare disease.