FeaturedActive 2 days agoBiggest 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 Comments22 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 2 days agoInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments50 repliesCoping
Active 2 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 Comments11 repliesCoping
Active 2 days agoDermatomyositisI don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this...Reactions 0 reactions Comments6 replies
Active 4 days agoMast Cells trigger my self anyone else have Mast cell and histamine problems? hot and cold intolerance?...Reactions 0 reactions Comments3 repliesAwarenessSymptoms
Active 5 days agoLooking for fellow giantsHoping to get a better understanding of Acromegaly and find others with the condition.....Reactions 0 reactions Comments1 repliesAwarenessCopingDiagnosis
Active 5 days agoWhere 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...Reactions 0 reactions Comments6 repliesCopingFriends & Family
Active 6 days ago Amyotrophic DermatomyositisAnyone taking injection methotrexate for this?...Reactions 0 reactions Comments0 replies
What 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 Comments13 repliesCoping
My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.Reactions 0 reactions Comments2 replies