#hnpp — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #hnpp, aggregated by home.social.
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I've also had a muscle in my shoulder just *stop working* for months three times in my life after sleeping on a hard surface. I'm beginning to suspect these are related and maybe #HNPP or something like it.
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I'm back from holiday worse for wear as usual. Had some weirdly allergic reaction to either a) gluten b) lactose c) water d) all of the above so have hives all over my face and pretty sick. Ah the life of #chronicIllness #disability #FunTimes #hnpp
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Just blogged: Stick days and HNPP - getting used to a new normal!
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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 -
#TGIF This has been me this week so I'm so glad it's #Friday! Life with #HNPP - c'est last vie. #FridayConfessions #FridayReflections
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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
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Anyway, if you see me at a con and I’m using a cane that means it’s a dodgy walking day. It also means I think I’m Sherlock Holmes, striding along with my stylish and ever-so-dashing cane. Well, striding may be wishful thinking, but hey, I’m a writer. Imagination is a wonderful thing.