Does anyone here have Mast Cell Activation Syndrome?...a reaction at that particular time I can eat it?...Reactions 0 reactions Comments4 repliesDiet & NutritionSymptomsTips & Advice
I wish others knew that......What is one thing you wish more people knew about living with a rare disease?...Reactions 0 reactions Comments25 repliesCoping
Madelung's...He did have a somewhat successful surgery from a thoracic surgeon quite a few years ago....Reactions 0 reactions Comments3 replies
Doctor just said I have some random virus but am wondering if it is true or not....Cough with a lot of phlegm, no appetite, a ear infection, sore throat, headache that comes and goes in 5-minute intervals....Reactions 0 reactions Comments1 repliesHealthcare TeamSymptomsDiagnosis
High red cells and tired constantly....I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision....Reactions 0 reactions Comments5 repliesSymptomsSleepTips & Advice
How Do You Cope?...Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, Reactions 0 reactions Comments17 repliesCoping
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...Reactions 0 reactions Comments0 repliesSide EffectsTreatmentTips & Advice
Unknown pain disease?...It’s a mystery as to what is going on. These are the symptoms. -ice cold feet -extreme pain in hand and feet....Reactions 0 reactions Comments1 repliesSymptoms
ALS...He knows he can't walk, but that's it. I think it's a blessing in a lot of ways. He seems content...Reactions 0 reactions Comments3 repliesCoping
What does advocacy mean to you?...Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a...Reactions 0 reactions Comments2 repliesAwareness
Addison's Disease ...I have a little information about it, but not much. I was diagnosed in December and finally have an appointment with Reactions 0 reactions Comments2 replies
Where do you find support?...Who supports you in a meaningful way? What does their support look like?...Reactions 0 reactions Comments0 repliesCopingFriends & Family
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and how others deal with...Reactions 0 reactions Comments0 replies
Hope for Cushing’s Disease...I went into remission and ended up now with SAI. I take 10 mg of Hydrocortisone a day and...Reactions 0 reactions Comments1 repliesAwareness
What do you guys think this is...I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all...Reactions 0 reactions Comments1 repliesDiagnosisTips & Advice
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...Reactions 0 reactions Comments1 replies
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!...Reactions 0 reactions Comments2 replies
Rare Diagnosis Experiences...How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions 0 reactions Comments10 repliesNewly DiagnosedSymptomsDiagnosis
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 Reactions 0 reactions Comments0 repliesTreatment
what are some tips for managing rar disease?...Follow the Treatment Plan: Management of a rare disease often requires following a specialized treatment plan....Reactions 0 reactions Comments0 repliesDiagnosis