Columns

Why This Year’s Birthday Is Extra Special

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…

Tell Me Why We Need to Talk About Organ Donation

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…

With Rare Disease, You Must Be Your Own Advocate

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…

We Have More Similarities Than Differences

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…

Essential Items I Pack for a Night Out

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,…

Chewing My Way Through the Tough Times

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…