Coping with books...I fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...Reactions0reactionsComments5 replies
FeaturedWhat fills your cups on hard days?...We want to know how you keep your own cup full while navigating difficult symptoms, multiple tests, and/or the exhaustion of fighting to be...Reactions0reactionsComments111 replies
Will you take our In America survey and help others understand the true impact of rare diseases?...The In America survey is now closed....Reactions0reactionsComments0 replies
Kidney Transplant/Primary Immune Deficiency...The balance of that disease with my autoimmune meds is a complicated balance. No one in my transplant group has had a...Reactions0reactionsComments1 replies
Numbness in fingertips, sensations in feet and head all depends on what I eat....Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have constant...Reactions0reactionsComments2 repliesDiagnosis
Antibiotics experience: Azithromycyn, Ethambutol and Refampin...A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success....Reactions0reactionsComments0 repliesSide EffectsTreatmentTips & Advice
seronegative gMG treatment beyond IVIG and/or Apheresis...IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV Graft Reactions0reactionsComments0 repliesTreatment
Doctor just said I have some random virus but am wondering if it is true or not....So i went to the doctor today and they said I just have some random virus but do not know if it...Reactions0reactionsComments1 repliesSymptomsHealthcare TeamDiagnosis
what are some tips for managing rar disease?...Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible....Reactions0reactionsComments0 repliesDiagnosis
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
