Re: duke study

[Guest guest]

Kathy,

Where in Maine are you? Did I already ask you that?

Elissa- mom to Jr. (4), Jennah (2), and Jesmarie (4 months-

lipomyelomeningocele, tethered cord, and syrinx- surgery at 3 months)

Moulton wrote:

I'm also a member of the study. They are so great at Duke. They came to

Maine to take our blood samples!

Kathy

Re: Is tethered cord a " fluke " or often associated with

something else

My family is also participating in this study. In addition to the

tethered cord study at Duke the same section of people are gathering

material as they go of families that have TSC and chiari as they are

seeing a higher percentage of TSC in certain chiari populations. If a

family qualifies for both studies the blood draw can be combined into

one. last I heard they are still recuting for both and raising

funding for the chiari study. The TSC study is fully funded. This is

a very worthwhile study that could do a lot for our children when they

are ready to have children.

Charnel

Holly

> >

> Myself, V, and others on this list are involved in a study by

Duke U to answer that question.

> There are no results as of yet. When there will be, it will be

generalized rather than individual. There are approximately 1100

participants. Environmental conditions at the time of conception seem

to be a factor. For instance, I was born in Ames IA (farm country) in

1954, that was when widespread use of herbicides and pesticides began,

including many now banned substances such as DDT. Is that why I was

born with a neural tube defect? Who knows, they are checking. Like

Bill said, lack of essential nutrients is a factor also being studied.

>

Not Medical Advice. We Are Not Doctors.

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