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...Reactions 0 reactions Comments1 replies
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...Reactions 0 reactions Comments0 replies
Multiple chemical sensitivityI am bothered by smells noises cold and smoke...Reactions 0 reactions Comments1 repliesCoping
SMSDoes anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions 0 reactions Comments0 repliesCopingTips & AdviceDiagnosis
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...Reactions 0 reactions Comments0 repliesAwarenessResearch & Clinical Trials
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...Reactions 0 reactions Comments3 repliesCoping
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?...Reactions 0 reactions Comments0 repliesWork & Employment
Where do you find support?Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...Reactions 0 reactions Comments0 repliesCopingFriends & Family
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...Reactions 0 reactions Comments1 repliesAwareness
Who has GI issues with CMT?I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...Reactions 0 reactions Comments2 repliesDiet & Nutrition