Ehlers-Danlos Syndrome Support Group

Hi there, I'm really glad that Dailystrength has a support forum for Ehlers-Danlos Syndrome. I have so many issues with my skin that it has made my life almost unbearable. It's to the point where I have developed depression so bad that I am barely able to concentrate or focuss long enough to get on the computer and make myself join support groups, forums, and get any information or answers about my illness.

My skin bruises really easy, I have the texture of a woman's skin in which my skin is soft and delicate. I have a huge problem developing stretch marks. My stretch marks are not from any of the issues that normally cause stretch marks. I've been to an Endocrinologist who ruled out pituitary issues and cushings disease. Another one of my big problems is that I have had a lot of doctors that I went to in the past who I had really bad experiences with and treated me as if a lot of my problems were just mental and refused to look further into my case. After having to deal with this a lot and getting some doctors telling me that they didn't know exactly what was wrong or where I should go here, I began believing that I would never recover. Then on top of that I lost my signifigant other and in a way wittnessed her death. After her death I developed PTSD which makes every day stressful and makes it harder for me to do everything, especially going to a new doctor, not knowing if the visit is going to be another dead end, another doctor who can't diagnos me, or another doctor who just sees mental illness and refuses to even do tests.

My main reason for this post is to share my experience is to reach out and see if any of you with Ehlers-Danlos has symptoms like I described above or knows anyone with those symptoms. I know there are different kinds of Ehlers-Danlos syndrome, so I know lots of people's experiences are different, but if the symptoms above sound familiar to you, please message me or reply to this Topic. Hopefully we can help each other get answers.
Posted on 05/18/12, 05:52 am