Coping with booksI fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...Reactions0reactionsComments5 replies
Welcome! 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....Reactions0reactionsComments69 replies
Caring for a child with a rare diseaseThis forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions0reactionsComments6 repliesCaregiving
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?...Reactions0reactionsComments21 repliesCoping
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
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
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
Dont knowMy wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...Reactions0reactionsComments1 repliesCaregiving
Finding a specialist I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...Reactions0reactionsComments1 repliesHealthcare TeamTreatmentTips & Advice
unexplained throat and neck pain for 7 weeks now. hi guys. was hoping anybody could help me out. about 7 weeks ago after an upper respiratory infection, i started to have throat pain. it wasnt like a sore throat...Reactions0reactionsComments1 repliesDiagnosisSymptomsTreatment