Join Us for a Special Bionews Rare Disease Day Webinar
At some point in everyone’s life, we all feel misunderstood. One of my earliest memories is from when I was 6, and a group of kids made me feel like I didn’t fit in. I don’t remember exactly what they did, but I do remember how lost I felt. It’s a terrible feeling, something we’ve all experienced.
After I was diagnosed with myasthenia gravis (MG), it felt like no one in my life understood me. It was as though I had lost my place within my circle of family and friends. Suddenly, I felt like I was 6 again.
Then, unexpectedly, my MG introduced me to a new circle of people who make me feel like I’m not so different after all.
This year, I have the honor of participating in a Bionews Rare Disease Day panel on Feb. 28 (Bionews is the parent company of this website), where I will discuss my life with MG and the importance of promoting rare disease awareness. The panel includes fellow Bionews columnists Paris Dancy, Claire Richmond, and Sherry Toh. Columnists Brianna Albers and Brandy Moody are assisting.
Ahead of the Feb. 28 panel discussion, our group met last week via Zoom to discuss each of our unique experiences with rare diseases.
Chatting with this amazing group of people made me feel normal, because their struggles and victories are similar to mine. When I shared my experiences with hospital stays and difficult doctors, I received understanding looks and nodding heads instead of horrified and confused expressions.
That’s not to say I’ve never had a supportive group of family and friends. Since my MG diagnosis, there hasn’t been a single moment when I felt I had no one to lean on. But there comes a point when an outsider’s understanding of disease hits a wall. How can I make someone truly understand what it feels like to lack the strength to simply lift a fork?
Listening to the stories shared by Claire, Paris, and Sherry made me realize that even though I have a rare disease, my experiences aren’t really that rare. It doesn’t matter that we have different rare diseases — we all know what it’s like to have our lives turned upside down.
I invite anyone who has ever felt alone because of their rare disease to join us on Feb. 28 at 2 p.m. CST. Advance registration is required. I couldn’t be more excited for others to hear our stories.
One of my proudest accomplishments has been changing my MG traumas to victories. And being able to share my story and help others feel less alone is my greatest victory yet.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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