Where do you find support?Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...Reactions 0 reactions Comments0 repliesCopingFriends & Family
Hope for Cushing’s DiseaseI was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...Reactions 0 reactions Comments1 repliesAwareness
Transitioning From Pediatric to Adult CareDoes anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...Reactions 0 reactions Comments0 repliesCaregivingCopingHealthcare Team
Who has GI issues with CMT?I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues...Reactions 0 reactions Comments2 repliesDiet & Nutrition
I wish others knew that...What is one thing you wish more people knew about living with a rare disease...Reactions 0 reactions Comments2 repliesCoping
Sweet SyndromeAny other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment...Reactions 0 reactions Comments0 repliesDiagnosis
