Snooping around...

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!

[ReineDeLaSeine14]

Hmm i'll help as much as I can.

I've never heard of LDS...but feel free to stick around as I see we share a lot of symptoms in common.

lol, It makes me mad that everyone's heard of Marfan Syndrome (it was on Oprah!) but LDS may be just as common but NO ONE knows about it... seeing as it was only described three or four years ago.

It's a collagen disorder, too, so that's where it gets its commonalities with EDS.

[xxBrittany]

Now that sounds like an amazing book that's about to be written!

Let me know when it hits the market.