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 Comments11 repliesCaregivingCopingTips & Advice
Active todayLearning 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 todayInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments43 repliesCoping
Active todayWhat 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 Comments10 repliesCoping
Active yesterdayUndiagnosed 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 Comments1 repliesCopingDepressionDiagnosis
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 Comments1 repliesCostCopingDiagnosis
I 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
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
FeaturedDietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...Reactions 0 reactions Comments7 repliesCopingDiet & NutritionNewly Diagnosed
How Do You Cope?Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...Reactions 0 reactions Comments17 repliesCoping