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Rare Disease Day 2020
Feb 29th is Rare Disease Day 2020! It is a day held around the globe to raise awareness about rare diseases! With over, 7,000 known rare diseases this day is going to be very powerful! We’d like to invite YOU to share your LEMS story, whether it be in writing or in a video. Hashtag it #WHATMAKESMERARELEMS so that everyone’s stories can be found. We may be a small group of ultra-rare disease patients; but I know our group is powerful! Share your story to inspire others!
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1 Reply
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How many people are living their life in SILENT pain with a rare autoimmune disease? And how many rare disease patients can walk without assistance? With my 6’2 frame, I tend to get unsolicited stares from strangers. Usually, eyes get transfixed from my shoes and slowly move up. I coined this phrase “elevator eyes.”
From the outside i look normal, my pain is invisible. Just because I don’t use a walker or wheelchair anymore does not mean I don’t have my share of internal pain and discrimination. If I am having a bad day, due to high humidity. I tend to stager a bit.
and concerned citizens have called the police on me for “staggering” to my car.
if I was on a walker or wheelchair, would the same concerned Citizens call the police?
ar
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