FeaturedActive todayBiggest challenges you face in your current journey?...What actually makes a difference?...Reactions 0 reactions Comments12 repliesCaregivingCopingTips & Advice
Ehlers Danlos and Epydermilosis Bulosis ...I had a Vitral hernia= surgery, 2 rt shoulder surgeries for either a tendon or ligament.two for a dropped parathyroid and a wrist that broke...Reactions 0 reactions Comments1 repliesDiagnosisAwareness
Podcast opportunity for Rare Disease Patients...I have a podcast called Rare connections on YouTube....Reactions 0 reactions Comments1 repliesAwareness
DBS and previous blood clots ...Has anyone been in a similar situation and how did you get thru?...Reactions 0 reactions Comments0 repliesCoping
How can we support you?...Is there anything in the rare community as a whole you would like to see more of?...Reactions 0 reactions Comments11 repliesAwarenessCopingTips & Advice
Patient with strange symptoms...However, when she travels and is at sea level, her symptoms completely disappear within a couple of hours....Reactions 0 reactions Comments4 repliesDiagnosisTips & AdviceSymptoms
seronegative gMG treatment beyond IVIG and/or Apheresis...IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV Graft in my arm....Reactions 0 reactions Comments0 repliesTreatment
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
Adrenal hormones...Hi, 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....Reactions 0 reactions Comments2 repliesTips & Advice
Doctor just said I have some random virus but am wondering if it is true or not....Cough with a lot of phlegm, no appetite, a ear infection, sore throat, headache that comes and goes in 5-minute intervals....Reactions 0 reactions Comments1 repliesHealthcare TeamSymptomsDiagnosis
My rare disease caused my kidney failure ...a bad disease called CMT....Reactions 0 reactions Comments2 replies
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....Reactions 0 reactions Comments1 repliesDiagnosisTips & Advice
Blood Test...Had a Parathyroid Test today. Came back high. Should I be worried?...Reactions 0 reactions Comments1 replies
My disease ...I was diagnosed in 2001.. and told I would be dead 'by this time next week '!!...Reactions 0 reactions Comments1 replies
Unknown pain disease?...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 are the symptoms....Reactions 0 reactions Comments1 repliesSymptoms
How has living with a rare disease impacted you?...As a thank you, if you qualify and complete the survey, you will be given the option to enter a drawing to win one of five $100...Reactions 0 reactions Comments0 repliesAwarenessResearch & Clinical Trials
Does anyone here have Mast Cell Activation Syndrome?...says only if it doesn't cause a reaction at The Time....Reactions 0 reactions Comments4 repliesDiet & NutritionSymptomsTips & Advice
FeaturedActive yesterdayWhat fills your cups on hard days?...Living with a rare disease or caring for someone who has one can be challenging....Reactions 0 reactions Comments109 replies
Will you take our In America survey and help others understand the true impact of rare diseases? ...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
Kidney Transplant/Primary Immune Deficiency...The balance of that disease with my autoimmune meds is a complicated balance. No one in my transplant group has had a PI at all....Reactions 0 reactions Comments1 replies
