Active todayExercise and Chronic Fatique and PainI have been going to physical therapy force weeks now after loosing excessive weight. I had severe protein malnourishment and severe muscle...reactions1replyExerciseCoping
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?...reactions36repliesCoping
UNDIAGNOSED RELAPSING NEUROMUSCULAR / NEUROLOGICAL DISORDER – SEEKING ADDITIONAL OPINIONSPatient • Female • Age 45 • United Kingdom Overview The patient developed a slowly progressive neurological illness approximately three years ago...reactions1replySymptoms
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions162repliesCoping
HypogammaglobulinemiaThis disease has caused me to be allergic to many medications and some can kill me. Looking for oxidative help so that...reactions1replyWork & EmploymentHealthcare TeamResearch & Clinical Trials
Do you consider yourself to have an invisible illness?What aspects of your rare disease are invisible to others? Share in the comments below....reactions17repliesAwarenessSymptoms
Have you ever seen your rare disease represented in the media? How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like...reactions19repliesAwareness
Undiagnosed Long Term Disease HELP!Hi all Brief rundown, I am a 23-yr old male and have been chronically ill now for over 24 months, bedridden, extreme...reactionsrepliesSymptomsDiet & NutritionDepression