FeaturedActive 6 days agoWelcome! Let's Get to Know Each Other.We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life....Reactions 0 reactions Comments50 replies
Active 6 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 Comments1 replies
Madelung'sI am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet. His neck and...Reactions 0 reactions Comments3 replies
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions 0 reactions Comments23 repliesCoping
How far do you travel for medical care?In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help you? Have you ever moved to access better...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 Comments6 repliesCoping
My disease I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I was coerced by the Dr. involved.. into having...Reactions 0 reactions Comments1 replies
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 Comments10 repliesCoping
What does advocacy mean to you?Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...Reactions 0 reactions Comments0 repliesAwareness
undiagnosed with normal blood workThese are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where medicine or therapy has helped. My symptoms are...Reactions 0 reactions Comments7 repliesDiagnosis
