Thursday, June 28, 2007


It has been a while, but I now have some more information. Unfortunately answers will probably never be available due to how little is known about EDS.

It is now believed that my sister either had Vascular or Classical. I present with either Classical or Hypermobile. My test for Vascular came back as negative, but there is a 1 to 2 percent chance of error. This leads my geneticist to believe I most likely have Classical since types run true in a family. Also, Classical can present differently in family members - with stronger manifestations in different affected areas. That would allow my sister to have more vascular symptoms and myself more flexibility. Problem is there is currently no way to genetically test for Classical and, until another family member has a diagnosis, no one else to whom I can be compared. So, we decided to err on the side of caution and list me as EDS-Vascular (just in case that 1 to 2 percent chance has hit me).

What does this mean? I am ordering a new ID bracelet and will notify my local EMS services of my condition since I will need special treatment in a trauma situation. I will have an echocardiogram every few years. I have been instructed for specific vascular complications to watch for - especially pain in my chest or between my shoulders - and to get myself immediately to an Emergency Department if it happens. I have to work on strengthening both my heart and my muscles. Yea for physical therapy! Since I am still considered young and my heart shows no complications I am to push myself so that, if complications arise, I will be better able to survive. My children show mild signs and we have decided not to diagnose them unless these signs and symptoms are more persistent.

Well, that's it in a nutshell. I'll be posting less frequently now but will still use this blog to post anything interesting or newsworthy about my progress.