CopingI'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...reactions2repliesNewly DiagnosedCoping
Hypoglobulimia Just wondering how many others have this, mine was med induced....reactions9repliesNewly DiagnosedTips & AdviceResearch & Clinical Trials
Healthcare navigator specializing in rare diseasesI’m a physician-turned healthcare navigator specializing in rare diseases. Visit my website and blog at maryrodriguezmd.com...reactionsrepliesHealthcare TeamNewly DiagnosedTips & Advice
FeaturedDietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...reactions11repliesCopingDiet & NutritionNewly Diagnosed
Rare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...reactions98repliesDiagnosisSymptomsNewly Diagnosed
Colonoscopy to rule out Mast Cell Activation Syndrome...What exactly are they trying to find out from the results of Colonoscopy?...reactions4repliesSurgeryNewly DiagnosedDiagnosis