Invisible IllnessWhat aspects of your rare disease are invisible to others?...reactions69repliesCoping
How to Be a Great Friend to Someone Living With a Rare DiseaseWhat characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...reactions6repliesCopingFriends & Family
CopingI'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...reactions1replyNewly DiagnosedCoping
How can we support you?What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...reactions12repliesCopingAwarenessTips & Advice
Looking for fellow giantsHoping to get a better understanding of Acromegaly and find others with the condition.....reactions1replyAwarenessDiagnosisCoping
I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...reactions1replyCopingCostDiagnosis
I have Myasthenia Gravis and ParkinsonsI would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...reactions3repliesAwarenessCopingResearch & Clinical Trials
DBS and previous blood clots I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years. I'm now eligible for the surgery but at an extremely high...reactionsrepliesCoping
Living With Adult-onset Still's Disease?Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...reactionsrepliesDiagnosisCoping