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Re: NIH Update/Betty

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Betty,

Iam so sorry for what happened to your son and best wishes in unraveling the

mystery. Thanks so much!

Sincerely, S.

Re: NIH Update/Bonnie

>

>

> > ,

> >

> > I don't know the answer, but I didn't see the first email you sent out.

> The

> > slow growth might be that you are deficient of a specific collagen, most

> > likely one that is prevalent in the skin. I was positive for vascular

> type and

> > they never said anything about it being slow growing. In fact mine was

> back

> > within 3 weeks. I am sure there is always a possibility that something

is

> wrong

> > with the sample, or how it has been processed too.....so don't get too

> scared.

> >

> > The collagen sequencing is done first with the skin fibroblasts. If

they

> > detect a deficiency, then they will look on the DNA for a mutation.

> >

> > Hang in there and let us know how it goes.

> >

> > Hugs,

> > Sue

> >

> >

> > To learn more about EDS, visit our website: http://www.ceda.ca

> >

> >

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