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02/03/2008 13:31
vschu2
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Hello everyone. My name is Vicky and I am now 27. I have had neurofibromatosis since birth, it is a mild form, I have a left leg that bows, I even under went a bone transplant when I was 4 years old (i was the second in the U.S. to have a bone transplant) It was either do the transplant or amputate my leg so my parents chose to try the transplant because if it didn't work then they could amputate like the doctors wanted. I am now married and the only issue I have is dealing with wanting children and not wanting to pass NF 1 along to my offspring, my husband is very understanding, but I want to be able to give him a child of his and my flesh and blood but am not sure how I can hanlde it if my child were to have NF 1 as well as the complications that go along with Pregnancy and NF 1 patients. (will it get worse, more growth, tumors, pain , etc.) How have others decided to have a child knowing they can pass Nf to their offspring? Is it a hard decison? What complications have you had to go through? Any help with these questions would help me. Thank you for listening.
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02/04/2008 13:26
fractured_innocence
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I got pregant 3 times. Each time I was on birth control. When I was pregant with my first I did get more fibroma growths. A huge one on the bottom of my foot and a few small ones. I have one child with NF and it is very mild. All three of them are very happy and as healthy as any other children.
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11/16/2008 18:18
beauty4ashes
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Hello, and thank you for sharing your story with us. And my goodness, the second in the US for a bone transplant! That is outstanding!

The issue of whether to have children is a personal one. It is my personal opinion that NF should not prevent you from having children if you want them, but again that is a very personal choice that only you can ultimately make.

Some things to keep in mind for consideration are that while there is a 50% chance of passing the NF gene on to your child &/or children, there is still the other 50% chance that you will not. In addition, even though Nf is considered a genetic disorder, about 50% of NF cases are from spontaneous gene mutation whereas there is no family link or history. So basically, there is no way to know whether your child will have NF or not, and it can happen whether you [i]have[i/] it or not so ultimately, you must follow your heart because only God knows what will come.

I understand your fears, and they are real & true concerns. Hopefully, we can have further discussions and help get this group going stronger with better information & support, and perhaps that will help you in making your decision.

Also consider, that apart from having your own biological children together, there is always adoption if you two are open to considering that as an option as well. It sounds to me like any child, whether with a medical condition or not, would be lucky to have you as their mother. Consider that perhaps,.. just perhaps, your experiences with NF, may be God's plan for a better understanding & supportive mother to an NF child, too. You just never know...

Looking forward to getting to know you better!

(((BIG HUGS)))

I'm F.I.N.E.
Frustrated, Irritated, Nonfunctional & Everything hurts!!

Sarcasm: Embrace it!
______________________

"The unanswered questions aren't nearly as dangerous as the
unquestioned answers."
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I know God will not give me anything I can't handle.
I just wish he didn't trust me so much.
- Mother Teresa
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"There's always light at the end of every tunnel, just pray it's not a train! "
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Faith makes things possible, not easy!


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