Grad School ...Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my body....Reactions 0 reactions Comments4 replies
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...Reactions 0 reactions Comments4 replies
Red rash in my mounth...I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...Reactions 0 reactions Comments1 replies
Active 4 days agoInvisible Illness...What aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments42 repliesCoping
Hypoglobulimia ...Just wondering how many others have this, mine was med induced....Reactions 0 reactions Comments9 repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis...Please tell me I'm not the only one with this diagnosis, here...Reactions 0 reactions Comments1 replies
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions 0 reactions Comments0 repliesCopingTips & AdviceDiagnosis
Multiple chemical sensitivity...I am bothered by smells noises cold and smoke...Reactions 0 reactions Comments1 repliesCoping
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 Comments8 repliesCoping
Active 8 days agoDermatomyositis...It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining...Reactions 0 reactions Comments3 replies
undiagnosed with normal blood work...These are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where...Reactions 0 reactions Comments8 repliesDiagnosis
Workplace Experiences...What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...Reactions 0 reactions Comments2 repliesWork & Employment
Who has GI issues with CMT?...I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...Reactions 0 reactions Comments2 repliesDiet & Nutrition
Dealing w more than one...How did I get both... Guess I'm just as rare☺️. I was denied Social Security for Ihh and lost the.appeal....Reactions 0 reactions Comments12 repliesCopingAwarenessDepression
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....Reactions 0 reactions Comments53 replies
