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Re: Marfans- NTD's-Kathy

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Kathy,

Well, I am nearsighted, mitral valve prolapse...hands are fine...not

quite a " trifecta " ! And I don't think in the realm of scoliosis my

curves were that extreme.

I do hope they are able to pin this thing down. I think I understand

that Marfans is really just a severe connective tissue disorder...and

I think the thinking is that perhaps there are many others walking

around (me & you?) where the disorder was not expressed quite so

severely. This, of course, ties into the scoliosis as connective

tissue problems in itls origin. As I mentioned earlier, having neural

tube defect in one of my pregnancies ( and then twice... also as

anencephaly in my one brother (who has mild kyphosis) & sister-in-laws

first pregnancies was very unusual according to the geneticists. We

both took large doses of folic acid prior to becoming pregnant and

have, so far our children are not showing any " back/spine " issues.

It will be interesting to see, now that folic acid has been added to

breads and cereals, if scoliosis diagnosis trends downward. I haven't

a clue if there is a connection between folic acid and

Marfans/connective tissue disorders..but who knows...

Surely better days are to come, Cam

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Hi Cam, HAPPY NEW YEAR!!!! You must have had the myelogram and ct scan done,did it hurt? I just read the paper again to refresh my memory of what it was but it didn't say if it hurt you. I have had a ct scan but not the myleogram. Are you really there for the 4 hours? Thanks for the info,Vonniecammaltby <cammaltby@...> wrote: Kathy,Well, I am nearsighted, mitral valve prolapse...hands are fine...not quite a "trifecta"! And I don't think in the realm of scoliosis my curves were that extreme.I do hope they are able to pin this thing down. I think I understand that Marfans is really just a severe connective tissue disorder...and I think the thinking is that perhaps there are many others walking around (me & you?) where the disorder was not expressed quite so severely. This, of

course, ties into the scoliosis as connective tissue problems in itls origin. As I mentioned earlier, having neural tube defect in one of my pregnancies ( and then twice... also as anencephaly in my one brother (who has mild kyphosis) & sister-in-laws first pregnancies was very unusual according to the geneticists. We both took large doses of folic acid prior to becoming pregnant and have, so far our children are not showing any "back/spine" issues.It will be interesting to see, now that folic acid has been added to breads and cereals, if scoliosis diagnosis trends downward. I haven't a clue if there is a connection between folic acid and Marfans/connective tissue disorders..but who knows...Surely better days are to come, Cam

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