welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

My Battle with Ehlers-Danlos Syndrome


10 years ago after living my entire life with mystery medical problems I was diagnosed with a rare genetic connective tissue disorder known as Ehlers-Danlos Syndrome. At the time it was classified as Hypermobility type, the least scary of the six different kinds of EDS. Recently I was able to travel out of state to see a genetisist and Ehlers-Danlos specialist at The Center for Human Genetics. The amazing Dr. Jeff Milunsky has confirmed my previous diagnosis of EDS but does not feel that I do in fact have Hypermobility type. He believes that I more likely have Classical type and possibly Vascular type. The only way to determine which for sure is with genetic testing. Determining the type is important as it will dictate my course of treatment and if I do have VEDS (vascular type) knowing about it could potentially save my life. If it turns out that I have VEDS it means that I am suceptible to things like spontaneous organ rupture, sudden aortic dissection, or things like a routine surgery being more likely to result in serious complications or even death. Hopefully I do not have this type, but if I do, having confirmation of VEDS through genetic testing will make it so doctors and surgeons will be less likely to accidentally kill me. That’s a good thing. Unfortunately my insurance does not cover this testing. Currently The Center for Human Genetics is holding a blood sample for me to give me time to come up with the money. I have one month in which to do so. I absolutely hate the idea of asking people to give me money but this is super crazy important so here I am asking…. Please please, pretty please, if you want to, and are able, and it doesn’t cause any strain on you financially at all, would you maybe consider donating a little something, please

expertly curated content related to this topic