preimplantation genetic diagnosis

[Guest guest]

Hi Amelia,

I think PGD has given us options. I would do it if I wanted to add to my

family. I have met a lot of people with CMT that have never had children because

of CMT. To have a choice now gives peace to many.

[Guest guest]

Let me preface this...

I know this is a very controversial topic. I know some people may

feel very strongly one way or the other.

I also would NOT trade my husband (who has CMT) or my daughter (who

also has CMT) for anyone in the whole world. I love them like crazy

and think they are just wonderful.

I want people's opinions or experiences on Preimplantation Genetic

Diagnosis for CMT. My husband and I always dreamed of having a BIG

family (like at least 4-5 kids) once we realized our oldest daughter

had CMT my opinion on that changed a bit. I started to realize what

a lifelong challenge this was going to be for her. My MIL got her

leg amputated this year. This has affected my emotions alot.

My daughter has struggled and overcome alot in her 4 years of life and I know

that is part of life.

I have started to consider PGD. I dont' know anyone who has ever

done this, and I'm very unsure of it myself. BUT I feel it is a way

to liberate our children from CMT...I know that challenges will come

regardless but at least the 50/50 chance is taken away.

Has anyone used this technology or considered it? I just feel that

maybe PGD with IVF is an answer for me and maybe our future kids.....

pondering,

Amelia

[Guest guest]

Hi Amelia,

I haven't had it, but you might want to look in our Files

under 'Pregnancy and CMT' for info, especially this research that was

done:

---Preimplantation genetic diagnosis for Charcot-Marie-Tooth disease

type 1A. (in-vitro for non-genetic transmission of CMT1A to the next

generation)---

You might also search our Archives, I seem to recall several people had

posted on their experience several years. If I was still in my

childbearing years, and had one of the types of CMT that PGD could

knock out, despite the cost, I would have tried it. Yes, it is one way

to completely arrest CMT in future generations.

Gretchen

[Guest guest]

We, too, are considering PGD for our next pregnancy. Has anyone on this list

done PGD? Or do you know someone who has?

[Guest guest]

My DH is the one with late-onset CMT, and I made him get tested so that our son,

who as yet has no symptoms or diagnosis but has pectus excavatum and slight

scoliosis, could get preimplantation genetic diagnosis, but my husband's gene

test was negative, and our daughter-in-law is now pregnant. She wasn't sure

about the preimplantation genetic diagnosis because she said maybe my husband's

genius was tied in with the gene.

As I see my husband suffer, I think it would be crazy not to get

preimplantation genetic diagnosis if you can afford it or your insurance would

pay for it.

Elinor

[Guest guest]

Hi Amelia,

Personally, 50/50 aren't good odds to me and since I now know that CMT can

affect each person so differently and with some of the posts I have read I think

it is worth looking into other options. I had never heard of CMT until last

year and had no clue I passed it on to my son. I can't begin to describe how

awful I feel that he has it. With the knowledge I have now, there is no way I

would take the chance of passing it along to another child as they don't have

the choice and they are the ones that would have to live with my decision.

I don't know the details of PGD but would love to hear more as it may be a

benefit to my son and his future should he choose to have children.

Please keep us posted.

Carmella

[Guest guest]

Well said Elinor.

[Guest guest]

Thanks for the feedback everyone. I will keep everyone posted when we

decide for certain or if I get any good info when I contact the clinic.

Thanks

Amelia