Will you take our In America survey and help others understand the true impact of rare diseases? The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we are fielding our Rare Disease In America survey...Reactions 0 reactions Comments0 replies
Blood TestHad a Parathyroid Test today. Came back high. Should I be worried?...Reactions 0 reactions Comments1 replies
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?...Reactions 0 reactions Comments0 repliesCopingDiagnosis
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions 0 reactions Comments25 repliesCoping
Does anyone here have Mast Cell Activation Syndrome?Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's not The Top Couple of Ingredients I can eat it, or if it doesn't cause...Reactions 0 reactions Comments4 repliesDiet & NutritionSymptomsTips & Advice
Unknown pain disease?Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a mystery as to what is going on. These...Reactions 0 reactions Comments0 repliesSymptoms
Transitioning From Pediatric to Adult CareDoes anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...Reactions 0 reactions Comments3 repliesCopingCaregivingHealthcare Team
High red cells and tired constantly.I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the...Reactions 0 reactions Comments5 repliesSymptomsSleepTips & Advice
My disease I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I was coerced by the Dr. involved.. into having...Reactions 0 reactions Comments1 replies
Dealing w more than oneHi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...Reactions 0 reactions Comments12 repliesCopingDepressionAwareness