I want to start a family but concerned about how my nf will be affected. I would like people to let me know their experiences and how pregnancy affected their nf.
did you notice growth of existing neurofibromas
did you get any new neurofibromas
I am seeing my specialist next week but would like to know other people experiences
thanks
fiona
Fiona,
I had all three of my kids before I knew that I had NF. I had no issues with my pregancies regarding NF.
Some folks are fortunate like I was. Others are not and do have tumor growth during that time.
Bottom line, don't let anyone else make YOUR decision. It's between you, your spouse and God.
My NF did change during pregnacy for both of my children...a few fibromas came out that I never had before......the second one more than the first one.....but my NF is mild in that aspect..I have several cafe-laut spots. Im glad I did have my boys....Hormonal changes affect NF-1 in most women...I've known about my NF since I was a small child......nothing huge changed except for my body image and I learned to just accept it, after all of that I thank god A doctor offered to work on me If I needed anything removed...and bill it to my insurance......
I have a friend by the way guys.....she said I was blessed having NF Im like HOW she said well If your child has NF if we didnt have all the science you would know he or she was yours.....and then people get tatoos.....I know you will be just fine it will not affect your brian LOL and you are loved in this world..at least that is how I feel...it took me a long time to accept my NF-1 and all of my flaws..
God bless Lots of Love Susan
I berated my sister soundly for having children because of the dangers of NF, but aside from learnng disabilties, lack of coordination, and poor vision, Sarah came out just fine. In fact my sister, Bert wants to have another one! Seesnow, is right. The decision is ultimately you own.
I didn't notice any changes in my body at all when I was pregnant with Jess... other than the huge belly that was growing right before my eyes. Jess was a blessed surprise/gift. I think if we had had the chance to sit down and discuss whether or not we wanted to risk passing NF on to our children we may not have had kids. Not because of what pregnancy may do to me... but because of the unknow risks and path NF takes.
We are lucky to have Jess, and so far, apart from a BT, LDs, etc...NF hasn't been too hard on her. She always bounces back.
shebie226
I have NF1 which was passed down from my mother. Unlike my mother who did not show any signs until later in life, after I was born. I showed signs almost immediately. The cafe latte spots and growths later on. Since then I have had some removed. I have two children and I have photos of me prior where I had none on my face, but now I have some. I do not know if pregnancy cause this or not.
I was told when I got pregnant it was a 50/50 chance of passing it on. My son has no signs of NF1. He is now 10. My daughter now 5, within in 3 weeks of birth got a birthmark on her waist which resembles a cafe latte. Sorry about my spelling. We also found out that she has an Optic Glioma on her left optic nerve, which is NF1. She has no sight in that eye. It was present from birth. She has shown signs of other cafe latte spots, so she gets sunscreen on a regular basis, but the only look like freckles for the most part. She has had no other signs of growths.
Just be prepared that when you have ultra sounds that they are going to take a closer look at the fetus' organs to make sure everything is fine.
Do not let having NF1 keep you from having children if thats what you want. You may just regret it later in life.
Sherdegraff
Lakewood CO
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