LDSgirl
06-06-2008, 05:33 PM
I'm in the very beginning stages of writing a novel about a teen with VEDS who becomes a vampire. Sorry if that seems flippant or something.
I happen to be a seventeen-year-old with Loeys-Dietz Syndrome type 2. I have scoliosis that, the doctor said, "is certainly not mild", pectus excavatum, some joint laxity, transparent velvety skin, easy bruising (nothing compared to my father, who's on Coumadin), and a somewhat dilated aorta. Both of my brothers are getting valve-saving aortic root replacement surgeries next month (luckily, we tolerate surgery MUCH better than VEDS patients--"you don't see surgeons complaining that it's like trying to sew up wet tissue paper"), but the LDS doesn't really affect my life much--unless I turn out to be at too high a risk for complications of pregnancy (uterus rupture and death) or if I ever have a child with much more severe LDS.
My mental problems are worse for me than the physical ones, and I can't blame them on LDS.
Anyway, if anyone can help me with research for the novel, that'd be great, but otherwise I'll just snoop around and pray/cry for you all while gaining insights into how teens live with chronic illness.
Thank you!
I happen to be a seventeen-year-old with Loeys-Dietz Syndrome type 2. I have scoliosis that, the doctor said, "is certainly not mild", pectus excavatum, some joint laxity, transparent velvety skin, easy bruising (nothing compared to my father, who's on Coumadin), and a somewhat dilated aorta. Both of my brothers are getting valve-saving aortic root replacement surgeries next month (luckily, we tolerate surgery MUCH better than VEDS patients--"you don't see surgeons complaining that it's like trying to sew up wet tissue paper"), but the LDS doesn't really affect my life much--unless I turn out to be at too high a risk for complications of pregnancy (uterus rupture and death) or if I ever have a child with much more severe LDS.
My mental problems are worse for me than the physical ones, and I can't blame them on LDS.
Anyway, if anyone can help me with research for the novel, that'd be great, but otherwise I'll just snoop around and pray/cry for you all while gaining insights into how teens live with chronic illness.
Thank you!