family planning

[smashrck]

I am 26 and I have IP. I was diagnosed at birth, due to the rashes. My parents and I participated in a medical study in Washington State. My younger sister was also born with IP.  Recently my mother told me that as a part of the study several doctors advised her that having more children would be "irresponsible", this was news to me, and prompted me to do more research into IP (my symptoms have been relatively minor...skin discoloration, no wisdom teeth, neurovascular veins in my eyes that I had treated with lasers.)
My husband and I would someday like to have children...and we believe strongly in educating ourselves... and making the best possible decisions for ourselves and any family planning.
Adoption is always an option...but is there a way to safely have a biological child? What steps should we take??

Thanks

[IPIFSE]

I am the Exec. Dir of the the IP fdtn.  I would respectively disagree with having children as being "irresponsible"  that seems harsh to me.

In the year 2000 the gene which causes IP was identified.  As a result there are several steps you can take to have a child.  I would advise that you consult with a genetic counselor who can give you relevant info.  I would also suggest that you contact the DNA lab at Baylor College of Medicine in Houston Texas as they would want to confirm your specific gene mutation.  Tel:  [phone].  They will inform you of the necessary steps.

Also,go to the IPIF web site and read the newsletter #8 it will explain various options you have to becoming pregnant.

Please call if you have additional questions.  Susanne Emmerich 212 452-1231

[Moosespb]

I understand your feelings, and all. My mother has IP, as I do, and one ofmy daughters as well. I have one daughter, however that is not affected. I was told when I had my first daughter that I should stop having children. I told him to go to hell...but thats me. I have had 4 miscarrages, most recently in April with twins. Miscarrage is a real issue with IP, however you can have a child. Feel free to message me if you would like to talk.

Jessica

[snowy87]

hi im 21 an was born with IP.
i have no wisdom teeth and blemished skin. ive just recently found out im pregnant and im quite worried about how it will effect me and my baby.
i have been told there is a 1 in 4 chance that my child will have it but i have been told that they will just monitor my pregnancy more so than normal but i should be fine.
so i cant see why you cant try for your own baby.
i will let you know if the doc tells me anymore when i go for my appointment on the 18th august.

sarah

[Jary08]

My dermatologist was worried i had IP because i have a lot of pigmentation on my arms and back from a rash i had as new born, but they didnt test because its apparently hard to diagnose when your older. I know its an X chromasome linked disease and only girls carry it. I think if a woman becomes pregnant with a boy it will result in miscarriage or stillbirth. Those males who survive have neurological disorders. The reason girls survive is because they have two X chromasomes whereas boys only have the one.

I think thats how it works anyway. Im so glad that theres a forum for this condition. Though its unlikely have it i think its great that its been mentioned. I wish all of you the best of luck and i hope you and future generations go on to have healthy babies!

[KDomo]

Hi there,

I am 25 from Australia and i have IP. My husband and I are just about to start IVF with Pre Genetic Diagnosis in which they are able to test the embryos for the genetic disorder. We are doing this in order to stop the IP from passing on. I believe that most IVF centres should be able to do this.

Hope this helps.