FeaturedActive todayBiggest challenges you face in your current journey?Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...Reactions 0 reactions Comments11 repliesCaregivingCopingTips & Advice
Active todayFinding a specialist I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...Reactions 0 reactions Comments0 repliesHealthcare TeamTreatmentTips & Advice
Active yesterdayAnyone have any advice about CIP?(Congenital Insensitivity to Pain)I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...Reactions 0 reactions Comments1 repliesAwarenessTips & Advice
How can we support you?What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...Reactions 0 reactions Comments11 repliesAwarenessCopingTips & Advice
Patient with strange symptomsI have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...Reactions 0 reactions Comments4 repliesDiagnosisTips & AdviceSymptoms
Adrenal hormonesHi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system. Everything is fine. The problem is that in...Reactions 0 reactions Comments2 repliesTips & Advice
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 think is going on. I have drop foot...Reactions 0 reactions Comments1 repliesDiagnosisTips & Advice
Does anyone here have Mast Cell Activation Syndrome?Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's not The Top Couple of Ingredients I can eat it, or if it doesn't cause...Reactions 0 reactions Comments4 repliesDiet & NutritionSymptomsTips & Advice
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. I have a high red cell count, it's at the...Reactions 0 reactions Comments5 repliesSymptomsSleepTips & Advice
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...Reactions 0 reactions Comments0 repliesSide EffectsTreatmentTips & Advice