Dr. Smallz affords me a higher level of independence than I've ever had as a person with a disability. My service dog has been a huge part of my resiliency and recovery. Lynn Julian Craniocervical instability, functional neurological disorder, glossodynia, hypermobile Ehlers-Danlos syndrome, mast cell disease, occult tethered cord syndrome, slow Transit constipation, SUNCT syndrome

Perhaps the bravest thing I've ever done was to practice racing starts on speed skates with my eyes closed while experiencing vertigo Marian Furst Acoustic Neuroma, Chronic Shingles, Common Variable Immunodeficiency

Having this condition helps me appreciate when I feel healthy and not take it for granted Laurie Eytel Nelson Syndrome

I had no idea what to do or what this was. I felt relieved. I was not crazy; I was not making this up! Josiah is 1 out of 300 people diagnosed with FCAS worldwide. Makenzie Cabrera on behalf of her son Josiah Familiar Cold Autoinflammatory Syndrome

The writers in Kaleidoscope #RareDisease Stories show strength, courage, creativity, and, even through fear, hope.
~🦋
https://a.co/d/3HxjJ6P
Proceeds donated to NORD
#CCI #FND #glossodynia #hEDS #MCAS #OTCS #STC #SUNCT #CVID #NelsonSyndrome #FCAS
#ChronicIllness #Rare #SpoonieSky #ZebraStrong

#SUNCT is arguably the most severe pain condition that afflicts humans.The severity of the pain has earned it the name “suicide headache”, and a suicidal risk exists in this condition. SUNCT patients face a journey that can be paved with feelings of loneliness and mistrust.

I live with this hell.

I do many typos because I can't see very well due to my neurological issues. So if you see some typos don't be like "learn to write, jerk".... just let me be, don't feel pity

#goingblind #neurological #neurologicaldisorders #SUNCT #neuronalpain #neurodegenerative #livingtildeath #payingmylastlife

Ah I see people are wondering about my #SUNCT hashtag. Was describing what it is already in that post. It just affects a few hundred people across the world so it’s no wonder I’m the first one here to make an hashtag of it. Kind of like a starting point for community, I hope!

As more people arrive here: #SUNCT is a rare headache disorder causing intense, daily, short-lasting attacks of severe pain. In my case up to 180-xxx attacks per day atm, since I’m 8yo. It’s effed up and caused a lot of problems in my life but I won’t give up. +: f this “pain makes you harder” shit