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 Comments3 repliesCopingCaregivingHealthcare Team
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...Reactions 0 reactions Comments12 repliesCopingDepressionAwareness
cerebellar ataxiaDealing with the many symptoms of ataxia. Has anyone else dealt with this?...Reactions 0 reactions Comments1 repliesCopingSymptomsTreatment
Holidays with a Rare DiseaseThe holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have to take into account during this time of...Reactions 0 reactions Comments1 repliesCopingFriends & Family
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?...Reactions 0 reactions Comments8 repliesCoping
West Nile VirusLong term walking difficulty. Walk very slowly with a cane....Reactions 0 reactions Comments0 repliesExerciseCopingTreatment
Multiple chemical sensitivityI am bothered by smells noises cold and smoke...Reactions 0 reactions Comments1 repliesCoping
SMSDoes anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions 0 reactions Comments0 repliesDiagnosisCopingTips & Advice
ALSMy 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going on or what's wrong with him. He knows...Reactions 0 reactions Comments3 repliesCoping
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