Then I missed Rare Disease Day because I was distracted. Oh well, it could still be rare disease day in your part of the world.
I have an inherited disease of the nervous system. My grandfather and my mum had it before me, my brother and I in my generation and my nephew in the next. In a miraculous stroke of fortune my kids escaped despite the 50 % chance of inheritance.
The short story is this disease (Charcot Marie Tooth or CMT) makes muscles atrophy and once that happens you are kinda up the poo-ey creek and not great at holding a paddle.
It effects about 1/ 2000 people so unless you are a hermit you would have met people who have it or know someone who knows someone.
I found and appropriated this list, people were asked to answer the question "you know you have CMT when......."
Not all of these things apply to me but most do and what doesn't is probably in my future:
I have more to say but i don't have the heart for it today.........