West Nile VirusLong term walking difficulty. Walk very slowly with a cane....reactionsrepliesTreatmentExerciseCoping
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitisPlease tell me I'm not the only one with this diagnosis, here...reactions1reply
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)I was an RN but didn't know about this disease. I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and...reactionsreplies
SMSDoes anyone on here have Smith-Magenis syndrome or have family members with it?...reactionsrepliesDiagnosisCopingTips & Advice
How has living with a rare disease impacted you?Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of rare diseases, we are fielding our first Rare...reactionsrepliesResearch & Clinical TrialsAwareness
ALSMy 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going on or what's wrong with him. He knows...reactions3repliesCoping
What could workplaces do to foster a more disability-inclusive culture?What ideas do you have for employers to create a more supportive work environment for people with visible or invisible disabilities?...reactionsrepliesWork & Employment
Hope for Cushing’s DiseaseI was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...reactions1replyAwareness
Who has GI issues with CMT?I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...reactions2repliesDiet & Nutrition