Active yesterdayWhat are some of the biggest accessibility challenges you face in your daily life due to your rare disease?Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing your thoughts or experiences about accessibility in the...reactionsrepliesAwarenessWork & EmploymentCoping
Active yesterdaycerebellar ataxiaDealing with the many symptoms of ataxia. Has anyone else dealt with this?...reactions1replyCopingSymptomsTreatment
Active yesterdayMultiple chemical sensitivityI am bothered by smells noises cold and smoke...reactions2repliesCoping
Active 7 days agoWhat helps you avoid burnout or chronic illness fatigue?Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...reactions22repliesCopingMental Health
What is the most annoying unsolicited advice you've heard?What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...reactions31repliesCoping
Dealing w more than oneHi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...reactions31repliesAwarenessCopingDepression
Unexplained Night sweats I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...reactionsrepliesCopingAwareness
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, or other challenges?...reactions58repliesCoping
CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...reactions3repliesCopingDepressionDiagnosis
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions95repliesCoping