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When you are diagnosed with a rare disease, you may think that your life is over. You read all of the different outcomes on the internet and begin to fear that the worst is here. Unfortunately, this may be true, but often your diagnosis may be more easily managed than…

This year, my husband and I will have been married for seven years. They say there is a thing called the “seven-year-itch,” and that absolutely terrifies me. We are just now finding our new normal. When Warren and I met, I recently had undergone a nasty breakup. My ex’s parting…

On Saturday, I attended an autoimmune disease seminar, where I listened to speakers talk about the importance of good gut health and how it affects the entire body. Experts told the audience that the microvilli in the digestive system are important for gut health, and we need the good…

It can be difficult being friends with someone who is chronically ill. They often have to cancel on you, or they might be exhausted at the start of an event and practically have to be carried out at the end. You may not know what to say to them…

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…

Many things change when the symptoms of myasthenia gravis (MG) start piling onto each other. I become physically weaker, mentally slower, and spiritually drained. I must spend my energy wisely, which means that sometimes I have to give up doing something fun so that I can do an everyday task,…

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…