Looking for rare disease advocates for a podcast.I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar conditions with it, educate medical professionals and the...Reactions0reactionsComments1 replies
Road to NMOSDIn 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired. I went to ER. UTI and stomach pain...Reactions0reactionsComments1 replies
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...Reactions0reactionsComments37 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...Reactions0reactionsComments111 replies
Learning 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...Reactions0reactionsComments23 repliesCoping
Medical Mystery - Can anybody help? My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...Reactions0reactionsComments3 repliesDiagnosisSymptoms
Undiagnosed 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...Reactions0reactionsComments4 repliesCopingDepressionDiagnosis
Unknown 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...Reactions0reactionsComments9 repliesSymptoms
Mast Cells trigger my self anyone else have Mast cell and histamine problems? hot and cold intolerance?...Reactions0reactionsComments6 repliesSymptomsAwareness
Long time to diagnosis I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No support never Complained again . Continuing symptoms terrible...Reactions0reactionsComments1 replies