Ehlers-Danlos Syndrome Support Group
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.
Hello everyone! I am Danny. I have been diagnosed with EDS 3... And it is severe. I am beyond flexible. Recently I went to the doctor and he suggested I have a surgery to pull my ankle bones back into place because they were 2 and 1/2 inches apart. I went and had that operation yesterday, and I was informed that both of my ankles are so far shredded (ligaments) that while the surgery would give me more stability, I will have to wear AFO's for the rest of my life. also I was informed that I have severe arthritis in both ankles and that I will be in excrutiating pain for the rest of my life. What wonderful news... NOT. I don't know what to think or say all I know is that this sucks and I am not going to lie and say I am fine and peachy keen about any of this... No... I am mad as hell and I want to know why me? It just doesnt feel good to know that this is how I will have to live.. yeah... Not happy..
I'm sorry to hear things ended up like that. Unfortunately not many doctors have a lot of experience in dealing with EDS patients. My legs have progressed to the point I require a wheelchair. I know it's difficult and frustrating having to adjust to a new way of life, but you have options. I was devestated each time I was informed of a needed lifestyle change - but I'm adjusting. If you want to chat or vent let me know, I've been through it.
Best wishes.