Rare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions0reactionsComments98 repliesNewly DiagnosedSymptomsDiagnosis
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...Reactions0reactionsComments11 repliesCopingDiet & NutritionNewly Diagnosed
Colonoscopy to rule out Mast Cell Activation Syndrome...What exactly are they trying to find out from the results of Colonoscopy?...Reactions0reactionsComments4 repliesNewly DiagnosedDiagnosisSurgery
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 ...Reactions0reactionsComments1 repliesNewly DiagnosedCoping
Hypoglobulimia Just wondering how many others have this, mine was med induced....Reactions0reactionsComments9 repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed