'Just keep swimming' says young woman with rare disease

Megan Hunter, 28, suffers from Myasthenia Gravis: an extremele rare neuromuscular disease affecting all her muscles. (supplied)
Megan Hunter, 28, suffers from Myasthenia Gravis: an extremele rare neuromuscular disease affecting all her muscles. (supplied)

Johannesburg – While she calls herself a mother of three “fur-kids”, Megan Hunter’s biggest dream is to have a baby.  

“I want to be strong enough to be able to fall pregnant and have a baby. That really is my biggest wish and my heart aches for one.” 

The 28-year-old is one in 5 000 people with Myasthenia Gravis: an extremely rare neuromuscular, autoimmune disease that affects all her muscles. 

- Health24: Myasthenia Gravis

“Simply put; my body attacks itself and the messages between my nerves and muscles don’t get through. 

“It affects my speech, swallowing, closing of my eyes, walking, getting up off the floor, lifting my arms above my head, any fine movement of my fingers, like doing up buttons. At times even bathing myself can be difficult,” she says. 

Hunter was diagnosed at the age of 15. 

“We were told that if we had waited much longer, I would have died.  My disease progressed very quickly and I was initially misdiagnosed with an eating disorder. 

“It was only when I was sent to a psychologist that he called my mum and together they decided there was more to this than the original doctor thought.

“By the time I got diagnosed I was sleeping almost 15 hours a day and only managing to swallow a quarter jar of baby food.”

Her biggest frustration is her battle to talk. 

“There is so much I want to say, but often I just don’t have the energy to get my words out. I can deal with battling to eat, or even walk, but I hate sitting in silence thinking about what I could be saying. Then I wish I could be slightly more ‘normal’.”

More people with rare diseases than people with Aids and cancer

Today Hunter works for Rare Diseases South Africa, a non-profit organisation that helps patients affected by rare diseases to access life-saving treatment and care. Tuesday celebrates International Rare Disease day, with the global theme of 'Research'.

“There are more people with rare disease than all the people with Aids and cancer added together. How scary is that? And people still don’t take rare diseases seriously,” she says. 

She wants to create awareness about rare diseases, specifically about Myasthenia Gravis.

“Through creating awareness; understanding and compassion will follow.” 

Hunter got married to the “most amazing man”, Warren in 2012. The operations manager says it was "love at first sight".

"I immediately thought she was the most beautiful woman in the world. I couldn't stop thinking about her ever since. She is the full package.

"I married her with full knowledge that she was ill. You have your tougher days than others, and some days it's just downright scary.

"But, we take it day by day. We are strong believers and we believe God will never put you in a position you can't handle."

According to Hunter, she’s only cried once about her disease. 

Quality of life not good

“The only real time that I have cried was when I found out the medication had affected my fertility and there is only a very small chance that my husband and I can have children – even with the help of IVF,” Hunter says. 

“I feel like it has robbed me of the one thing that a woman is built for.” 

Last year, Hunter was told her disease progressed to the point where it does not respond to traditional treatment any more.

“Currently I am in hospital for a week out of every month. The doctors have agreed that my quality of life isn’t great, but they aren’t sure what to do with me,” Hunter says.

“It scares me a bit to think of that. There is still so much more that I want to do with my life and so much I want to say.” 

Hunter tries to stay positive and laugh every day because she never knows when it could be her last.

“I try to find something good in every single day.”

Referring to a refrain repeated by Dory, the regal blue tang fish in the animated film “Finding Dory”, she says her motto has become: “Just keep swimming, just keep swimming!”

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