Environmental Allergies Or No...This is the 3rd time in the last 5 years or so. I have seen an Allergist, a ENT doctor, did many...Reactions0reactionsComments2 replies
Does anyone have olgilvie syndrome?...Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....Reactions0reactionsComments1 replies
FeaturedDietary Changes...Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have Reactions0reactionsComments7 repliesDiet & NutritionCopingNewly Diagnosed
Holidays with a Rare Disease...What special considerations do you have to take into account during this time of year?...Reactions0reactionsComments1 repliesCopingFriends & Family
Caring for a child with a rare disease...This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions0reactionsComments6 repliesCaregiving
Grad School ...I suffer from neuromuscular disease and it affects basically every part of my body. I will be studying data analysis....Reactions0reactionsComments4 replies
Madelung's...He is ambulatory and able to travel, but would it would be helpful to find medical care within driving range....Reactions0reactionsComments3 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 help you?...Reactions0reactionsComments4 replies
My disease...I was coerced by the Dr. involved.. into having an "open lung biopsy,"..by way of being told that if I did NOT...Reactions0reactionsComments1 replies
What does advocacy mean to you?...Are you involved or want to get involved in advocacy for your rare disease? Tell us what you're up to! Looking to learn...Reactions0reactionsComments2 repliesAwareness
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?...Reactions0reactionsComments1 replies
Invisible Illness...What aspects of your rare disease are invisible to others?...Reactions0reactionsComments69 repliesCoping
Traveling With a Rare Disease...Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with...Reactions0reactionsComments6 repliesTravel
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!...Reactions0reactionsComments2 replies
West Nile Virus...Walk very slowly with a cane....Reactions0reactionsComments0 repliesExerciseCopingTreatment
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...Reactions0reactionsComments1 replies
Addison's Disease ...I have a little information about it, but not much. I was diagnosed in December and finally have an appointment with an...Reactions0reactionsComments2 replies
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I was an RN but didn't know about this disease....Reactions0reactionsComments0 replies
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions0reactionsComments0 repliesDiagnosisCopingTips & Advice
Multiple chemical sensitivity...I am bothered by smells noises cold and smoke...Reactions0reactionsComments1 repliesCoping
