The Elhers Danlos Syndrome Type 4 just seems like such a long shot, I met with the geneticist because the neurologist thinks whatever I have is either genetic or evolving because I am so young. Although, I am not far enough along to be diagnosed with a neuroly degenerative disease, and I am no doctor I feel that is the way in which things are going. I am ok with that I just really want answers at this point so I can take it from there and get involved in a clinical trial or something. I am sorry to hear of everything that you have been experiencing, and truly hope everything gets better. I have found that trying to keep as busy as possible can be of some relief, so you aren't thinking about what is going on as much. Staying positive is probably the most difficult thing to do, and yet it is the most beneficial if we are able to achieve that. Try to find things you love, and surround yourself with people who make you happy so that you have the strength to continue on. I hope your surgery goes well, and if you ever want to talk I am here. I feel like this is the first time I can really talk about how I am feeling with dealing with all of my medical issues, and I want to thank you for talking with me. I feel like such a burden on my family that I don't like to seem weak to them. Even with that I feel like everyone who knows me, especially my mother treats me like I'm fragile, and it drives me crazy. I love the feeling of being part of a community that really understands.