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.

“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.