Arachnoiditis (ARC) Community

Learn how others live with Arachnoiditis (ARC) and share your story

CALL FOR HELP

by ninifa published 11 days ago

I receive no medical acknowledgment of my condition. No one is interested in my illness which only continues to worsen. I am alone. I am scared of paralysis, of being overwhelmed by pain. I am waiting for advice. My Marfan syndrome, complete with dural ectasia and perineural cysts, has developed into arachnoiditis with trichodynia, sometimes known as “ponytail syndrome”. I am on Tramadol, Gabap...

BEAT FROM SWITZERLAND - MY ARC STORY

by Beat66 published about 1 month ago

Having been diagnosed with ARC, I am still searching for answers to the diagnosis, searching for treatment possibilities, searching for acceptance and trying to help find ways, to make the public aware of this rare disease.
Here is my story: I am a Swiss national, I am 50 years old (born in 1966), divorced, single Dad of a 17 years old daughter, suffering from a club foot and I am living in Sw...

ARACHNOIDITIS

by Cal Jennings published about 1 month ago

Video from the Arachnoiditis support group

Vigdis Thompson Foundation from klassewerbung on Vimeo.

VIGDIS THOMPSON FOUNDATION

by klassewerbung published about 1 month ago

A story of a patient with arachnoiditis...

CALL FOR ARACHNOIDITIS STORIES

by RareConnect team published 3 months ago

There are still many people living in all regions of the world that have yet to be properly diagnosed with Arachnoiditis. We are reaching out to patients who wish to share their stories of diagnosis and personal life experience. Stories can be submitted anonymously to team@rareconnect.org . Story submissions will assist others in their journeys. Availability of testimonies, awareness and educat...