FeaturedBiggest challenges you face in your current journey?Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...reactions65repliesCaregivingCopingTips & Advice
FeaturedWhat fills your cups on hard days?Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...reactions112replies
Active todayDoes 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...reactions7repliesDiet & NutritionSymptomsTips & Advice
Active todayUnexplained Night sweats I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...reactions4repliesCopingAwareness
Active 6 days agoDoes anyone have olgilvie syndrome?Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....reactions2replies
Active 6 days agoTransitioning 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...reactions4repliesCopingCaregivingHealthcare Team
Active 6 days agoBlood TestHad a Parathyroid Test today. Came back high. Should I be worried?...reactions2replies
Active 6 days agoWhat 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...reactions2repliesDiagnosisTips & Advice
Active 6 days agoAddison's Disease Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little information about it, but not much. I was...reactions3replies
Active 6 days agoHypoglobulimia Just wondering how many others have this, mine was med induced....reactions9repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed
Active 6 days agoRed rash in my mounthI have red "rash" or something in her mounth for more then 2 months. What do you think this is?...reactions2replies
Active 6 days agoWorkplace ExperiencesHas your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...reactions3repliesWork & Employment