#rarediseaseadvocate — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseaseadvocate, aggregated by home.social.
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This is a huge deal. I believe the condition that I have #HNPP is actually very prevalent but it's only ever tested if there are symptoms.
In South Korea, however, it turned out there were 16/100,000 in a similar study.
100,000 babies to have genetic code mapped
https://www.bbc.co.uk/news/health-63906892 #RareDisease #RareDiseaseAdvocate -
I'm going to start the #hnpp tag as it's not here yet. I have it. It stands for Hereditary Neuropathy with Liability to Pressure Palsies. It's a rare degenerative neurological condition, closely related to #multiplesclerosis.
It means I'm losing my limbs, my legs are around 30% and arms about 50%. My spine is at around 50% now hence needing a wheelchair. I hope to raise awareness and allow others to find me here!
#rarediseaseadvocate #ChronicIllnessDisability #MSWarrior #DisabilityAdvocate