Emery-Dreifuss muscular dystrophy
Forum

Current topics:

• - What is the most frustrating or difficult aspect of living with a rare disease?
  Hello everyone,  How are you today? As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, cha

Current topics:

• - What natural herbs or supplements have you tried for painful joints?
  Hello Carenity members, I have had numerous surgeries on my clavicle (in fact, I have the first ever done surgery on my clavicle and I am in some medical books - have basically very minimal of my ori
• - Getting mobile when you cant move
  Any tips on regaining mobility.just getting back on your feet has so many challenges looking for ideas and support on this topic..
• - Photo testimonial: Years of diagnostic uncertainty facing Ehlers-Danlos Syndrome
    Delphine's testimonialYears of diagnostic uncertainty facing Ehlers-Danlos Syndrome    When I was a child, I was already in pain. Back pain, stomach pain. I thought it was the same for everyon