When I underwent a stem cell transplant at the beginning of the year, I was given a 40 percent chance of survival — not just for the procedure to work, but for me to live through it and the recovery. I am still in that “recovery stage,” but I…
It is my birthday this month, and I could not be more excited. I am one of those people who cannot sleep the night before their birthday and will wake up excitedly at 4 a.m. I do dread the thought of being sung to — because I never quite know…
I don’t know about you, but whenever something bad happens in my life, I ask, “Why me?” I don’t want to accept what has happened, so I think it must be the result of something I have done that warrants punishment. I used to think that everything happened because of something…
Recently, I attended an event that reminded me of the importance of speaking up, letting others into your world, and starting a conversation to create awareness. The event was organized by the South African nonprofit organization Tell, which stands for “Transplant Education for Living Legacies.” It aims to encourage…
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 are reading this. Going to a general practitioner when you have…
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 in a wheelchair or walk with a limp. They may have…
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 quite like that one. It was a long day, but luckily,…
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 it wasn’t anorexia, then it must be something similar. By the…
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 the extent to which my condition affected my life. I was…
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 been a very trying time. However, it has also been good…
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