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Rare Disease Day is around the corner! What makes your family rare?
With Rare Disease Day right around the corner, our #WhatMakesMeRareLEMS pertains to our Rare Families are well! Share what makes YOUR family rare! How did your loved ones’ diagnosis change your family dynamic? Was it all a negative experience? What can providers do to make things easier on families of patients with LEMS? Share your story here!
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2 Replies
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My problem is 99.9 % of doctors have never come across L E M S. Which doesn’t help family or the general public. Recently to part as a practical model final years exams for medical students. The consultant assessors hadn’t come across as L E M S! The plus side I’m registered with the rare disease register in London U K.
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Indeed a difficult situation. The Rare Disease Day has been popularized only in these last few years. It won’t be long before doctors as well as the regular public will be more aware and empathetic. Until then talking to people we run into will help spread awareness, I suppose.
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