FeaturedActive yesterdayBiggest 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...Reactions 0 reactions Comments19 repliesCaregivingCopingTips & Advice
FeaturedActive 5 days agoWhat 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...Reactions 0 reactions Comments109 replies
Active todayDealing 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...Reactions 0 reactions Comments13 repliesAwarenessCopingDepression
Active todayMy symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.Reactions 0 reactions Comments1 replies
Active todayRare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions 0 reactions Comments11 repliesNewly DiagnosedSymptomsDiagnosis
Active 2 days agoInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments45 repliesCoping
Active 2 days agoWhat is the most annoying unsolicited advice you've heard?What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...Reactions 0 reactions Comments11 repliesCoping
Active 3 days agoFrom Parkinson’s to Progressive Supranuclear Palsy10/2020 diagnosed with one disease, 12/2023 P.S.P. I was told that this new disease diagnosis was so much worse. My fate was sealed. Following the direction of my Movement Disorder...Reactions 0 reactions Comments0 replies
Active 4 days agoLearning 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...Reactions 0 reactions Comments7 repliesCoping
Active 5 days agoFinding a specialist I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...Reactions 0 reactions Comments0 repliesHealthcare TeamTreatmentTips & Advice