My battle w/ 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? Ugh, typing that felt gross. Just a minute while I remind myself that I'm asking for help paying for a medical test and not a new tv.... Ok, I'm reminded. Thank you to any and all who donate anything at all. You're an amazing person for reading this, and you're extra amazing, super smart, and most likely have great taste in pants and books if you donate. Flattery gets you everywhere, right? Oh, I'm also going to throw in a link to The Center for Human Genetics website because really the money will only briefly be with me and you might want to know where your donation is going to end up. They're not just my doctor they're also a super cool non-profit that does awesome work in the field of genetics. Thank you again. ~Sarah.
http://chginc.org
