Active 2 days agoI wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments39 repliesCoping
Active 7 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?...Reactions0reactionsComments21 repliesCoping
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
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
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
Invisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions0reactionsComments56 repliesCoping
Dealing 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...Reactions0reactionsComments18 repliesCopingAwarenessDepression
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?...Reactions0reactionsComments23 repliesCoping
Looking for fellow giantsHoping to get a better understanding of Acromegaly and find others with the condition.....Reactions0reactionsComments1 repliesAwarenessCopingDiagnosis
Where do you find support?Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...Reactions0reactionsComments6 repliesCopingFriends & Family