Kidney Transplant/Primary Immune DeficiencyHi all! Feeling rather alone. I had a kidney transplant because I have Compliment 3 Glomerulopathy. I also have Common Variable Immune Deficiency. The balance of that disease with my...reactions1reply
Rare Disease in ChildrenWere you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!...reactions2replies
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 sensations in my feet, I get sores...reactions2repliesDiagnosis
Antibiotics experience: Azithromycyn, Ethambutol and RefampinA member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success. Do you or someone you know...reactionsrepliesSide EffectsTreatmentTips & Advice
seronegative gMG treatment beyond IVIG and/or ApheresisIVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV Graft in my arm. Doctors predict this will...reactionsrepliesTreatment
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 is true. symptoms: Body aches, Fever 101-102.3 it...reactions1replyDiagnosisHealthcare TeamSymptoms
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. Due to the rarity of the disease, it might take longer than usual. Consulting...reactionsrepliesDiagnosis
cerebellar ataxiaDealing with the many symptoms of ataxia. Has anyone else dealt with this?...reactions1replyCopingSymptomsTreatment
Environmental Allergies Or NoI'm dealing with something very weird. This is the 3rd time in the last 5 years or so. I have seen an Allergist, a ENT doctor, did many tests and...reactions2replies
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. I will be studying data analysis....reactions4replies