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
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 repliesHealthcare TeamCopingCaregiving
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
Caring for a child with a rare diseaseThis forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions 0 reactions Comments0 repliesCaregiving
Kidney Transplant/Primary Immune DeficiencyHi all! Feeling rather alone. I had a kidney transplant because I have Compliment 3 Glomerulopathy. I also have Common Variable Immune Deficiency. The balance of that disease with my...Reactions 0 reactions Comments1 replies