[ashleym1983]

I have EDS. Its real name is Eihlers-danlos syndrom. It is a very rare conective tissue disorder. I know a lot about it but at the same time I feel I still have so much to learn. I do not anyone else with this disorder. It is a very pain thing to live with. Most people do not find out they have it until later in life. I founf out at a very young age. I was 25 or so. I am now 28. If there is anyone out thete who has this and needs someone to talk to I am here. I know how alone you can feel having eihlers-danlos syndrom. It can be a struggle and very frustrating. If anyone wants to learn more about EDS feel free to ask any question. Please only through open messages. Can not answer questions on private messages. I just learned this myself as I am new to this site. I am not a doctor and can not give a diagnosis but am hete to talk with and can tell you what I have done and have gone through. I hope there is someone out there that I can help or just be a friend to. Have a great day everybody :)


Ashley <3

[J_9]

I'm not familiar with it, but I've heard about it and am interested. Would you mind telling me the symptoms? Is there a reason why it is not found earlier during childhood?

[ashleym1983]

I'm not familiar with it, but I've heard about it and am interested. Would you mind telling me the symptoms? Is there a reason why it is not found earlier during childhood?

Well with me my tendons in my fingers kept breaking. I had what is called swan neck diformity with all 8 finger. There reason people don't get checked for it because doctors don't think to check for. There is a lot of pain and lots of injuries at the joints. Most doctors will treat you like a drugbseeker or just but the injuries to wear and tear. It is so rare that know doctor thinks to check for it. I was lucky and had an amazing hand surgen who cought the symptoms. It is a gean dyfect. I am call a mutian in the books. Lol. But not cool super hero powers. Lol . My knees dislocate many times a night and have to relocat them. Along with my hips and shoulders. Most people end up with many many surgeries before they think to have a rumatoligest or genetic specialist to do the bood work. Your skin feels like velvet when you have this diorder. Also your skin can be very strechy. Brusing easyly in another sign. Thete is a lot of joint pain and lots of dislocations. The tendons strech out and allow the joints to slip out. If u have stage 4 your organs can spontanest explode without notice. If u have stage for having children can kill you. Stage 4 is the rarest stage. The only way to test for it is blod work and the doctor will make you bend and stretch to see if you are more flexable than normal. When I was a lttle gril I would lay on my belly and watch TV with my toes on my forehead. There are some web sites out there that can explain it. They can be confusing sometimes. At least that is what I felt going through the site. They have a foundation but they are not good at getting back with you or even answering question. I am still learn more about my disorder everyday. I will get my paper work out and leave mote info later this afternoon.