The Mighty and Global Genes collaborate for Rare Disease Day to ask their rare communities what lessons they’ve learned, and how rare disease has affected their lives.
Transcription:
With over 7,000 rare diseases, rare disease isn’t as “rare” as it seems.
1 in 10 people live with rare disease in the U.S.
Here’s what a few people affected by rare disease have learned.
“I am strong and resilient, even when I don’t feel that way in the moment.”
“I learned to listen to my body and to not listen to doctors when they tell me there is nothing wrong.”
“I have learned, and continue to learn, how amazing unconditional love can be. The last two years have been difficult, rewarding and full of surprises.”
“My son taught us he doesn’t have to be a statistic.”
“I’ve learned to accept this illness as a part of me, like any other feature.”
“I have learned I can be a useful member of a patient community and help others with the same condition, in the same way being part of the community helps me.”
“I don’t have to change my goals and dreams, I may have to change the path to achieving them.”
“Growing up with a rare disease, there are many challenges. We are resilient against obstacles.”
“I’m basically Wonder Woman disguised as a CRPS and gastroparesis warrior.”
“No matter how ultra rare your condition is, people do care about your story!”
“There is no age requirement to demand change and fight for your life.”
“I’m stronger than I thought I was, and I can inspire others to help them with whatever they’re going through.”
“My condition has made me a better human being. It’s given me a perspective about life I otherwise wouldn’t have had.”
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