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...reactions17repliesCopingFriends & Family
High red cells and tired constantly.I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the...reactions8repliesSymptomsSleepTips & Advice
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions82repliesCoping
Phrenic Nerve PalsyTwo and a half years ago I had acute neck and shoulder pain. This lead to severe dyspnea treated as asthma, but then progressed from one to both hemidiaphragms not...reactions1comment