Re: PGD and informing children

[Guest guest]

Wow! Thank you so much for sharing your story, e100. I will

absolutely insist that my children pursue this when that time comes.

And now that reminds me.... as far the sexual education for my

children, they need to be informed that there is another very

important reason to avoid unplanned pregnancies. These discussions

are really helpful!

I am so glad this worked for you. It makes me very hopeful.

Danita

----- Original Message -----

From: franke100

Sent: Friday, May 23, 2003 2:34 PM

Subject: Preimplantation Genetic Diagnosis

Hello,

I am primarily a lurker on this board, but I wanted to share my

experience with preimplantation genetic diagnosis, or PGD. It IS

available in the United States, and I have done it ... successfully!!

The place that performs it is called the Reproductive Genetics

Institute, which is in Chicago. The procedure basically involves IVF

(in vitro fertilization), except they test the egg (or embryo) and

only implant those that do not carry the CMT gene. To the patient,

it's really no different than the process infertile couples go

through, except we're not infertile :>)

I always wanted children, but did NOT want to take the chance of

passing along CMT. I went to a geneticist years ago to do this type

of screening for pregnancy, but the trouble was that I did not have

any known type of CMT mutation. I tested negative for Types 1A, 1B,

X, etc. So, after years of persistance, Baylor College finally found

the gene (Type 2E)--a great day for me. From there, I went straight

to PGD and it worked on the first try. To me, PGD beats the

alternative type of screening, which is to get pregnant first and

have an abortion if the embryo has CMT. I wanted no part of that.

With PGD, you take precautions on the front end. Only the " good

eggs " are fertilized and implanted, so there is no moral dilemma.

I now have a 3 month old little girl, and I can't tell you what a

relief it is to know that she is free and clear of CMT. We need to

get her verified through a blood test, but PGD was to supposed to be

99% effective, so I am not nervous at all. Science is simply

amazing. I realize that everyone has different views about having

children, but this IS an option. They can do the testing for any

known genetic abnormality. It can be expensive, but IVF is covered

by insurance in my state, so I only had to pay for the genetic

testing part--a small price to pay to have my little one healthy, in

my opinion. I feel wonderful that I went this route. To think that

my little one can be anything that she wants to be without physical

challenges is simply amazing to me.

Here is the information for anyone that is interested:

Reproductive Genetics Institute

2825 North Halsted

Chicago, IL 60657

Phone: 773-472-4900

Feel free to e-mail if you'd like more information. I don't check

this board too often.