NF1 and pregnancy

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


I have a question

  • By cindeezie · New reply yesterday at 2:14 pm
  • 3 replies
  • Would taking prenatal vitamins affect a woman with nf1 ...

what can happen?

  • By Ruucsandra · New reply April 15, 2014
  • 11 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 ...

PGD testing and IVF for NF1

  • By yevchik · New reply April 14, 2014
  • 25 replies
  • I'm in the process of PGD testing right now. Have anyone done or was thinking of having that ...

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 ...

Hellp and preclampcia

  • By lacybaas · New reply September 16, 2013
  • 2 replies
  • When I was pregnant with both kids I had them both early. My daughter was 23 weeks born 1.6 lbs my son at 7 months 3.5 lbs. I was really sick emergency c-section on both ...

I want to have kids but i dont want them to have nf

  • By coke1978 · Posted August 28, 2013
  • 0 replies
  • I would like to go the IVF / PGD route, also I would like to have a surrogate however I feel its going to be expensive. Did anyone else in this group go this route ...

PGD - Our Journey

  • By little-laura · New reply August 2, 2013
  • 9 replies
  • We have been referred for genetic counselling for test for pgd we will then be referred to Care Nottingham for pgd It will be a slow process as we need several appointments with genetic counselling and ...

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