Ehlers Danlos and Epydermilosis Bulosis I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004 to see a Geniticist before they were both...Reactions 0 reactions Comments1 repliesDiagnosisAwareness
Adrenal hormonesHi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system. Everything is fine. The problem is that in...Reactions 0 reactions Comments2 repliesTips & Advice
Coping with booksI fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...Reactions 0 reactions Comments3 replies
Do you allow your child with a rare disease to go on overnight school field trips?If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....Reactions 0 reactions Comments0 repliesCaregivingTravel
What do you guys think this is I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all think is going on. I have drop foot...Reactions 0 reactions Comments1 repliesDiagnosisTips & Advice
Living with Mast Cell Activation62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I am finding out and finally knowing these words...Reactions 0 reactions Comments2 replies
My rare disease caused my kidney failure I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT...Reactions 0 reactions Comments2 replies
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