Neurofibromatosis and pregnancy

[jd11365]

My very good friend has neurofibromatosis and would like to get pregnant. She does not want to risk passing this to her child. Does anyone know of any options for her? Since this is rare and she is not very computer saavy, I thought I might be able to help her find some information. I would love to be able to offer some support/suggestions and thought one of my BBB friends might know something about this. Any help would be appreciated.

Jamie
Mommy to Kayla
5-1-03

[JenaW]

Do you know if she has type I or type II? I remember reading about neurofibromatosis in school (I am an OBGYN PA), but don't recall much about it now other than the skin manifestations. I could look up some info for you, but I am headed out of town for a week, so it will have to wait until I come back. Email me if you are interested, so I remember - [email protected]

She should definitely meet with her OB now BEFORE getting pregnant to discuss things. If I remember correctly, there can be some complications with pregnancy and NFM. Her OB can also refer her to genetic counseling. They would be the ones to discuss the risk of passing it on to your child. I think it is autosomal dominant, but it doesn't have a straight forward pattern of inheritance.

HTH.


Jera
Mom to Carter ~ 05.13.03

[jd11365]

I will double check with her but I remember she said she has the less serious kind...though it is still a serious condition which requires consideration before pregnancy. I would really appreciate any information. She's such a kind person who deserves to have a healthy baby, and I'd love to be able to offer her some information to help her be as blessed with a beautiful baby as I am.

I am definitely going to email you...have a safe and fun trip!

Jamie
Mommy to Kayla
5-1-03

[dogmom]

Neurofibromatosis (both types) is an autosomal dominent genetic disorder. So there is a 50% chance of passing it on to a child. There is some varience in the gene expression in different families, so how effected a child is with the disease will vary. There are options for people with genetic disorders with conception/pregnancy. The best thing for your friend to do is see a certified genetic counselor. He/she is trained to explain the statistics in realistic terms to potential parents, including options.

Here is a link to the Neurofibromatosis foundation. She could always contact them by mail or phone. http://www.nf.org/

Jeanne
Mom to Harvey
1/16/03