Hello. I’m pretty quiet on here, but I would like to connect with other people in the Wilson’s Disease community. A hashtag yielded nothing, so I’m starting it here. If you see this, please amplify. #WilsonsDisease #raredisease #rarediseases #rarediseaseadvocate #livertransplant #liverdisease #wilsondisease

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