Burning ear syndromeI began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...Reactions0reactionsComments3 replies
Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markersI just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as well as the boys only research and studies...Reactions0reactionsComments1 repliesResearch & Clinical TrialsCopingAwareness
Leg movement2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all, trip up stairs n more things than I...Reactions0reactionsComments7 repliesTips & AdviceTreatmentDiagnosis
Traveling With a Rare DiseaseTell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...Reactions0reactionsComments9 repliesTravel
Rare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions0reactionsComments98 repliesNewly DiagnosedSymptomsDiagnosis
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...Reactions0reactionsComments0 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...Reactions0reactionsComments27 repliesAwarenessCopingDepression
Learning to cope w/all my medical issuesI'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling are the best! I'm dealing w/6 autoimmune diseases...Reactions0reactionsComments26 repliesCoping
My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.Reactions0reactionsComments3 replies