becs67,
My NF did tend to flair up immediately after I gave birth to my daughters. In my case it was always when my hormones were out of whack. (During puberty, and after both of my pregnacies.) But keep in mind that every case is different. Just because it happened to me doesn't mean it will happen to you. Talk to your geneticist and your ob-gyn. Good luck and best wishes.

i have nf, schwannomatosis, i suffer a lot, i have my dochter before i now it,
now she has alsoo pain and must be tested on it, i suffer a lot and i ame so afraid she has it to, i dont want to see that she suffer like me, that's sommething that i dont can live whit, is the hardest thing to live wit it, see your children have pain

Hi Everybody-

First of all i want to thank everyone who posted thoughtful replies. Especially Taqueme and igloogirl.

I understand the value in questioning things. but i believe the original post (and a couple replies) is extemely biased and dangerous. There are sensitive people reading these and I would hate to think of a young person (or anyone) logging on for help and reading those words. We all need to speak about our pain, but these sites are for support not to increase self-loathing.

So that being said, I decided to have kids because my partner and I knew it was the right thing to do for us. My NF up to that point had been "moderate" but i wouldn't conder my life not worth living. If you say that we shouldn't have children, then you are saying that our parents shouldn't have had us if they knew...

My daughter has NF and my son does not. So far she has no signs other than CALS, and is a beautiful, amazing kid who touches numerous lives. I would love her and make her life worth living if she had several complications. Everyone is right, there are so many things that could go wrong in pregnancy, and I wouldn't trade her for any other person on earth. One "expert" told me recently that probably 70% of NF cases are mild, and that may even be an underestimate since there are people who don't even know they have it. True, it can be a horrific disease, but that is only one possibility out of many.

Also, research is moving ahead. So will there be a cure tomorrow? No, probably not, but by the time our kids are adults? Possibly!

Becs67-I didn't have too many problems after my first pregnancy, but had a lot more NFs after my second. We decided to stop at two because of that. Each case of NF is completely unique, so it does not get more severe or more mild with each generation. It's a new experience every time.

Take care, everyone, and please try to stay supportive of one another.

I think that it doesn't matter what ppl are. Many ppl look at NF and see that their life is now totally ruined. They are wrong, there are many more diseases that are ten times worse than NF, and ppl still live through it and have a happy successful life. If my child had nf i would give him/her all the support, but i would not look at him/her any differently.

I think had my parents knew the possibility of me having this would they up and end it for me before it began??? I am 21 and have not had a single issue from NF1, I know that differs from other people but my life has been more than normal to the point where I find it easy to forget I have nf. Obviously no one can judge simply because what you have experienced may differ greatly to what another has. I have always wanted children and up until recently thought it was probable, but I cannot simply right off becoming a parent mainly because of my own experiences (or lack there of). Knowing my father has lived all his life without a single lump or bump and the fact that I have not had any yet I am hopeful, and when the time comes I will have to think it over, maybe if I or even my dad had any complications from nf the my opinion would be different.

My mother never had any bumps until after she had children. something about the hormonal change that a women goes through during pregency

hi there!
I am a 32 year old male, with NF.. If i ever found someone to spend my life with, I would love to have kids, but I wouldn't want to have that kid go threw the ....things i went threw growing up, my life was rough because of the NF i was different and never fit in,, I still wouldn't want to take that right away from any woman i would settle down with (not sure how to word that) I really would love to have akid, but would refrain from it. not fair to him/her or to the woman i would settle with.

I have 3 children and they all have NF. God blessed me with kids, It is not all that bad having NF. It's the people in this world that are butt heads. They hate what they fear and fear what they hate. Yeah it's a shame that people treat others like me so wrong. It's like they think they can catch it or we cant do anything like they can. Having NF is difficult enough. But dealing with dumb *** people with closed mind is hard enough. Plus doctors that dont understand squat that deals with this type of illness make you even madder. But in the long run. I still can say I got blessed in some way. I got the chance to have children. God's Gift to me. Cause there the ones who shows me, there mother unconditional Love!!

my thinking having kids when have nf is maybee for some kinds of nf possibell, i have schwannomatosis and have a lot of tumors on my nerves, some day i cant walk, and have nerve pain, that i don"t want to give to my wirst annemy, so why i give it to kids???

how can you say nf is not all that bad? i'm 42 yrs old i just found out i need more surgery to remove more tumors frm my spine. i made the decision when i was 17 not to have kids and i'm glad i did yes you can take care of them if they are born with nf but what if something happens to you? who takes care of them than? maybe your case is'nt bad but any child you have could be worse off than you . how can you guys say it's not all bad. i was adopted and my birth father had nf i have never met them but i ever do i'm going to tell them how selfish they were. first they have a baby knowing the risks than they give her up for adoption because she has it. don't get me wrong giving me up was a gift because i have a wonderful caring family but that does'nt change the fact that i have this horrible disorder that has taken over my life. i would never ever put a child of mine through what i have had to encounter.

i dont think you should tell people not to have kids just because they have NF as Marah said everybody takes a risk when having children with any birth defect, i was the first in my family to get it, so a gentic mutataion for me, as mine as been very mild I hope to start a family in the near future, Congrats Rebecca 20091 i am very happy for you & your husband

Hiya everyone, got NF1 from my dad, before they had me my parents had two children who did not have it, so when they had me they found out it was genetic...I am 17 weeks pregnant and after a lot of soul searching me and my husband decided to have a baby by ourselves without medical intervention. Its a choice and not an easy one, but 'll love my child whatever the outcome and have refused all genetic testing, including spina bifida and diowns screening

RE: #55 and to all those that said they chose or choosing not to have kids.
Today there are more options including prenatal testing (CV at 8-10 weeks, Amnio a few weeks later).
Don't trust your GP or Family Doctor to know everything - you gotta do your own research and ALOT of leg work but its becoming FAR more accessible.

drone these are only useful if you are prepared to terminate the pregnancy

I have nothing aganst anyone that has children knowing that they have nf but with me I was diagnosis when I was only 5. When I was only 21 I had my tubs tied ( witch was no easy task finding a doc that would) I did not want my unborn child to have to go through what i have my whole life. and with a 50% chance I did not want to take that chance.