FeaturedActive todayBiggest 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 Comments8 repliesCaregivingCopingTips & 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...Reactions 0 reactions Comments109 replies
Active yesterdayI am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...Reactions 0 reactions Comments0 repliesCostCopingDiagnosis
Active 3 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 Comments9 repliesCoping
Active 3 days agoUnknown pain disease?Looking for help with my condition. 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...Reactions 0 reactions Comments1 repliesSymptoms
Active 3 days agoUndiagnosed still but something is wrong Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t...Reactions 0 reactions Comments0 repliesCopingDepressionDiagnosis
Active 3 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
Active 4 days agoI have Myasthenia Gravis and ParkinsonsI would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...Reactions 0 reactions Comments3 repliesAwarenessCopingResearch & Clinical Trials
Active 5 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 Comments6 repliesCoping
How can we support you?What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...Reactions 0 reactions Comments11 repliesAwarenessCopingTips & Advice
Invisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments42 repliesCoping