Active 3 days agoHolidays 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 Comments0 repliesCopingFriends & Family
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 Comments2 repliesCaregivingCopingHealthcare Team
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
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 Comments6 repliesAwarenessCopingDepression
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?...Reactions 0 reactions Comments12 repliesCoping
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions 0 reactions Comments23 repliesCoping
Invisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments8 repliesCoping
West Nile VirusLong term walking difficulty. Walk very slowly with a cane....Reactions 0 reactions Comments0 repliesCopingExerciseTreatment
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 repliesCopingDiagnosisTips & Advice
