Positively MG – Megan Hunter

Hearing the words “you have a rare disease” is not something you ever expect. Nor is it anything you could ever really prepare for. But unfortunately, it does happen — and it may have happened to you if you…

As a part of the rare disease community, I interact with many people who have unique differences to what society deems “normal.” They may have ports or permcaths, feeding tubes or nasogastric tubes. Perhaps they are…

Last weekend, I was lucky enough to attend an Ed Sheeran concert. Passenger opened for him, and I danced the night away, smiling so much that my cheeks got sore. I have been to concerts before, but never any…

When I was first diagnosed with myasthenia gravis, I already was headed for a crisis. I had been battling symptoms for a couple of months, yet all of the doctors told me they were psychosomatic. They said that if…

When I received my rare chronic illness diagnosis, I felt like I was all alone in the world and nobody truly understood what I was going through. My friends and family felt sorry for me, but they didn’t understand…

I have been housebound since my stem cell transplant and was starting to get rather crabby about the whole situation. I am used to independence — visiting friends and going to work — so this has…

Last weekend, I watched the movie “Wonder” again — for probably about the fifth time. The first day it was released in South Africa, I sat in the cinema crying my eyes out. Since then, I have watched…

When someone with a chronic illness says they are tired, they don’t simply mean, “Oh, I could probably do with a nap.” They mean that their body is beyond exhausted, that they can’t keep their eyes open, and that…

“I’m going in for chemotherapy.” That was my response when people inquired about my treatment plan. “But you don’t have cancer.” That was the reply I got from most of them. “So it can’t be that bad. I mean,…

Last year, I had a port fitted. This is a small medical device placed under the skin just under the collarbone. It allows for drips to be set up without nurses having to dig around for a vein.

For the past two years, pipes have been sticking out of my chest. I have had a port beneath the skin just under my collarbone. Many treatments have caused me to catch numerous infections floating around, so I have had…

It has been a while since I have written a column. So much has been happening, but at long last, I am able to sit back on the couch and not immediately pass out from absolute exhaustion. So, I…