Sweet Syndrome...Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...reactions6repliesDiagnosis
My rare disease caused my kidney failure...I'm still learning about it but I'm on three different pain medications for it as it...reactions7replies
From Parkinson’s to Progressive Supranuclear Palsy...Jesus remains the focus of my journey but we know ‘Faith without works is dead’....reactions1reply
Holidays with a Rare Disease...What special considerations do you have to take into account during this time of year?...reactions1replyCopingFriends & Family
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I was an RN but didn't know about this disease....reactionsreplies
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis...Please tell me I'm not the only one with this diagnosis, here...reactions2replies
Madelung's...He is ambulatory and able to travel, but would it would be helpful to find...reactions4replies
undiagnosed with normal blood work...My symptoms are extreme and painful tightness in my hips and lower back as well as unexplained...reactions9repliesDiagnosis
Welcome! Let's Get to Know Each Other....We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or...reactions70replies
seronegative gMG treatment beyond IVIG and/or Apheresis...IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3...reactions2repliesTreatment
Coping with books...I fill up my cup by reading. I love science fiction specifically, because it tells reactions5replies
Does anyone here have Mast Cell Activation Syndrome?...Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's...reactions8repliesDiet & NutritionSymptomsTips & Advice
Unknown pain disease?...It’s a mystery as to what is going on. These are the symptoms. -ice cold feet -extreme...reactions12repliesSymptoms
Colonoscopy to rule out Mast Cell Activation Syndrome......What exactly are they trying to find out from the results of Colonoscopy?...reactions4repliesNewly DiagnosedDiagnosisSurgery
Extremely rare and ambiguous medical case....Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am...reactions3repliesDiagnosis
Have you ever seen your rare disease represented in the media?...How did it make you feel? Did you feel it was an accurate depiction?...reactions19repliesAwareness
Nags and /or citrine deficiency...Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these...reactions2repliesCaregiving
I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna......(my right hand) When I fully extend my wrist, making it bend as far backward as...reactions6replies
