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

Just blogged: Stick days and HNPP - getting used to a new normal!

https://cavanscott.com/2023/01/30/stick-days-and-hnpp/

#hnpp #hnppawareness

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

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

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.

#hnpp #neuropathy #walkingsticks #walkingcanes

Some of the conditions I have are #SchizoaffectiveDisorder, #Autism, #ADHD, #PTSD, #TourettesSyndrome, #HereditaryNeuropathyWithPressurePalsies (#HNPP), #EssentialTremors, #Aphasia, and other physical disabilities. I’ve also been going through a lot of other health problems and it looks like I might have #multiplesclerosis but they haven’t figured it out yet. #MS #Schizophrenia #BipolarDisorder