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Neurofibromatosis Message Board
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Old 01-19-2011, 09:57 PM   #1
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Rhiannon68 HB User
Please someone help me!!!

My daughter is pregnant and I found out today that the father has Neurofibromintosis. I had noticed a while back that he has these nodules all over his body, small cyst looking things. I know he has them removed a lot. He also has epilepsy. I told my daughter to be careful about ever having children with him since she told me it was inherited.
Now she is pregnant and I am terrfied. I don't know what to think and all these pictures are running thru my head of having a baby brought into this world with severe problems. I am afraid. Can someone help me and give some advice? My daughter is young and has ADD and all the burden will fall on me. She already has one child from a previous teen pregnancy. I cant take much more

 
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Old 01-22-2011, 06:44 AM   #2
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Re: Please someone help me!!!

I know it is scary, it is a 50/50 chance that her child could have nf. I am 44 years old and have a mild case. My husband and I decided not to have children for two reasons. One is that it could be passed on and the other that it could make my nf worse. Even if the baby does have Nf it could be a mild case. They are also making many advances with this disease. There are also a number of disscusion boards on this disease.

 
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Old 01-22-2011, 10:37 AM   #3
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Re: Please someone help me!!!

She seems to think b/c his case is not severe, that the baby won't have a severe case and I don't believe this to be true, from what I am reading. He has NF 1. I am just beside myself from all I am reading. I am scared to death. He said no one in his family has it, he just had some mutant gene??

 
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Old 01-28-2011, 01:16 AM   #4
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Greeko HB User
Re: Please someone help me!!!

Im type 2 NF and fortunitly am unaffected by it in any significant form, But do understand how you are feeling, im worried myself about having children in future and am hesitant to talk to my partner about it at this stage but will in future when the time for talking about children comes into play. Best you can do it wait and see what happens, offer your support.

 
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Old 02-10-2011, 05:25 PM   #5
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Bermuda89 HB User
Re: Please someone help me!!!

Even if he has a mild case, that does not matter. There is still a 50/50 chance that they baby could have it. It could be a mild case or more servere it does not matter if the parents case is mild.

 
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