NF1 and pregnancy

Find information and support here if you have neurofibromatosis type 1 (NF1) and are pregnant or thinking about having children.


Has anyone had a c section?

  • By hazel_kinsel · New reply yesterday at 8:21 pm
  • 3 replies
  • I have nf and currently pregnant. Its looking like I will have to have a section as I experienced a very traumatic Vaginal delivery which nearly left me incontinent, so it recommended I have a c-section ...

PGD/IVF for NF1 (not infertility) covered by insurance?

  • By KellieRod · New reply April 21, 2014
  • 8 replies
  • Hello, I am new to this group but have been on the Inspire group for some time now. I was diagnosed with NF1 in 2010 at the age of 28 after having a few miscarriages. I then went on to having an extremely ...

Gonodal Mosaicism???

  • By nofear2012 · New reply April 21, 2014
  • 6 replies
  • Hi all, I've recentlly descoverd this site, and is from it that I become aware of this case called gonodal mosaicism. Me and my husbant have a baby girl who's been dignosed with nf when she was less then ...

PGD testing and IVF for NF1

  • By yevchik · New reply April 19, 2014
  • 27 replies
  • I'm in the process of PGD testing right now. Have anyone done or was thinking of having that ...

what can happen?

  • By Ruucsandra · New reply April 18, 2014
  • 14 replies
  • Hi all I have been diagnosed with NF1, both myself and my son( nearly 2 year old). So far al is good. We have nothing apart from the spots and I had nothing apart from the spots. In the pregnancy I had ...

I have a question

  • By cindeezie · New reply April 16, 2014
  • 3 replies
  • Would taking prenatal vitamins affect a woman with nf1 ...

NF and Pregnancy

  • By livelife89 · New reply April 10, 2014
  • 9 replies
  • Im currently pregnant, and im 8 months. I noticed that during my 2nd trimester, fibromas started to grow. Small and big ones. Mainly on my back and now my neck.. Im very sad and i hate it! But so far ...

pregnant and having NF1

  • By andrews-girl23 · New reply April 2, 2014
  • 10 replies
  • any body who knows anything care to inform me on experience? about being pregnant and having NF1 and giving birth ...

What causes mosaic NF or segmental NF?

  • By 23annie23 · New reply March 22, 2014
  • 1 reply
  • From what i understand, mosaic and segmental occur after conception as opposed to the moment of conception as with NF1. I was wondering if anyone knows up to what week of pregnancy the mutation is possible ...

30 new bumps looking,to get pregnant !

  • By KGCostner-5 · Posted March 20, 2014
  • 0 replies
  • Dear little Laura ,I know you are probably a little worried becaise you have grown mote bumps and you are looking forward to this pregnancy. I am going to assume that you ate with child right now .I have ...

Pregnancy effect on NF Patient

  • By xciiimaria · New reply March 11, 2014
  • 8 replies
  • I was wondering what is the effect of pregnancy of an NF type 1 patient? I know that there is 50% chance that the baby might get the effected genes. But I don't know how the pregnancy will effect the ...

My experiences during pregnancy and after...

  • By manders09 · New reply February 8, 2014
  • 4 replies
  • Okay, so I haven't really updated in a while. I don't know if any of my friends are still active on here, but maybe this will help someone else. My husband and I now have a beautiful, intelligent 22 month ...


  • By Krowe9290 · New reply January 22, 2014
  • 38 replies
  • I really need to let out my emotions and I feel I can do that here where most likely at some point another woman has felt the same as me. For the past 2 years (since getting married to my husband) I have ...

30 no bumps looking to get pregnant?

  • By Carabellz · New reply December 13, 2013
  • 17 replies
  • In early 2014 I will hopefully be starting ivf. I have nf1 with birthmarks only. I'm wondering if anyone here formed bumps during pregnancy without having any previously? And did they then disappear ...

I have nf1 and want to have a baby

  • By cindeezie · New reply December 10, 2013
  • 24 replies
  • So I'm 20 years old and my husband and i wanna have a baby, I only have the spots so far thank goodness and I was wondering will i get those bumps If I get pregnant ...

having NF and wanting to be a parent

  • By andrewsgirl183 · New reply October 20, 2013
  • 29 replies
  • Hello my name is Tionna and im starting this discussion because im looking for ansewrs maybe some one els out there is having the same problem that i am. I have NF1 but i am not disfiguered but i do have ...

NF and pregnant

  • By ilovedamon · New reply October 18, 2013
  • 21 replies
  • Has anyone with NF had trouble getting pregnant? Or experience problems with pregnancy? My husband and i have been trying on my ovulation day and nothing! he takes adderall for ADD as well so maybe that ...

Hypothalamic tumor

  • By rguy · Posted October 18, 2013
  • 0 replies
  • Hi my three-year-old son was recently diagnosed with the hypothalamic tumor. We just met with Endocrinology. She said most likely it's affecting his growth in height. His last vision test was good. She ...


  • By beautifulsoul · New reply October 5, 2013
  • 4 replies
  • Very mild nf1. 19 And although im not thinking about kids at the moment ( wants to finish college first ) i tend to worry about my future. I know about the 50/50 chance but i would like a family one day ...

IVF Route

  • By Heymur · New reply September 17, 2013
  • 2 replies
  • Hello all! I know that this has been discussed in the past but the discussions have been closed and I have some questions: I have NF1, my husband does not have it. We want to have children (adoption is ...

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