NF1 and pregnancy

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


Passing on to children

  • By SophieG3 · New reply May 26, 2015
  • 34 replies · Photos
  • Im 23 years old - been diagnosed since i was 6 - I have NF1 - very mild - i have cafe au lait marks over my body and freckles under my arm pits - has anyone here passed it onto their children as i know ...

small baby

  • By happygrammy · New reply May 16, 2015
  • 5 replies
  • Is it common for mothers with NF1 to have small babies ...

PGD - How well it works

  • By YellowDucky · New reply April 27, 2015
  • 11 replies
  • Hi everyone, We know that PGD isn't always accurate, but we're wondering whether anyone here has gone through PGD, been told that the embrios are unaffected, and still had children born with NF? Also ...

Can you get fibormotis she being pregnant

  • By Cindylou04 · New reply April 15, 2015
  • 2 replies
  • Hi I'm 22yrs old and I've had nf1 since I was born I only have Cal spots, and I was wondering down line when I do have kids will I get any bumps or tumors while being pregnant? Have any of your pregnancies ...

IVF "clinic failed to screen test-tube father of 99 babies for NF1"

  • By Faustyna · New reply April 11, 2015
  • 8 replies
  • ‘It is impossible to rule out genetic disease with 100 per cent certainty since it is not possible to test for all inheritable diseases.’ fragments from 3026032/IVF-scare-rogue-Viking-sperm-don ...

Nf and pregnancy

  • By sarahjane1980 · New reply April 2, 2015
  • 3 replies
  • I have nf1 and I am 15 weeks 4 days pregnant but the pregnancy is down to ivf just wondering is there a chance that bAby will have nf even though it was donar eggs we used. Also is it possible to get ...

Blood test for adult daughter

  • By mountdenali · New reply April 1, 2015
  • 6 replies
  • My daughter is considering having a child. I have NF 1 and so far she has presented no symptoms of the disorder. Is there a blood test to determine if she could be a carrier of the gene ...

NF and nursing

  • By kristen84 · New reply March 22, 2015
  • 10 replies
  • Hey all! I am 34 weeks pregnant with my first and, I have NF. I have gotten fibromas all around my nipples, I was just wondering if anyone else has had these symptoms. IF SO were you able to nurse? Thanks ...

Nf pregnancy

  • By KiaBuniNF · New reply March 10, 2015
  • 3 replies
  • I would like to know what to expect during pregnancy if you have nf1 or schwannomatosis... What are the comiplications associated with and what are common occurrences .. Are we at higher risk of miscarriage ...

Pregnant with NF

  • By Reneecarmenn · New reply March 5, 2015
  • 11 replies
  • Hello all! I just was in need of some comforting words right now, I am about 17 weeks pregnant with my first baby boy and I couldn't be more excited. I am however a little nervous about the possibility ...

Tube Ligation

  • By kquick27 · New reply March 1, 2015
  • 6 replies
  • My husband and I have been in and out of theconversation of tying my tubes since December 2013. We've talked to numerous doctors who are very aware of my illness and feel that pregnancy will progress/worsen ...

NF During pregnancy

  • By yevchik · New reply February 14, 2015
  • 8 replies
  • Im 17 wks. pregnant. Recently I noticed multiple red bumps/ rush all over my chest and belly. Does anyone know if it's related to NF. I'm hoping that it's just hormonal, or allergic reaction to something ...

NF1 and pregnant

  • By korissamay · New reply February 11, 2015
  • 11 replies
  • After 4 years of trying to conceive with my boyfriend and after going through ovarian cyst surgery 6 months later we finally concieved!:) I have nf1 never had any problwms except for the cafe spots on ...

Nf having kids

  • By Ruthopie · New reply February 3, 2015
  • 10 replies
  • I came across post about memeber calling people who have nf selfish if they have kids. It made me cry. I have mild form.i manage to get degree, in loving really relationship. My cleft have caused more ...

Watch and Wait??

  • By MOM120504 · New reply January 27, 2015
  • 16 replies
  • I have an 8yr old with no signs of NF and a 3 1/2 yr old with a single CAL or birthmark on his thigh. Also me and my husband have no signs of NF. Our 9month old son however has about 15 CAL's. We took ...

wondering when I should get my son checked out hes 1 hes 7 weeks old and n

  • By kayla1214 · New reply January 27, 2015
  • 2 replies
  • Im living with NF one an just had a baby boy an was wondering if anyone knows when I should get him tested I found out I had nf 1 when I was 12 im worried I passed it to my son has anyone experience this ...

I have NF1, what are my chances of conceiving a child with NF2?

  • By CaitW15 · New reply January 11, 2015
  • 8 replies
  • I was born with NF1 as a spontaneous gene mutation. (Nobody in my family history has had it) if I conceive naturally what are my chances of my kid having NF2? Are there ways to not pass NF at all ...

Electrodessication Surgery Greater Toronto Area

  • By Cyclist1962 · New reply December 27, 2014
  • 4 replies
  • Have there been any Canadians in the Greater Toronto Area that have been successful in finding a doctor that will perform electrodessication surgery for mass removal of NF tumours? If so please provide ...

What does a Genetic Counselor do?

  • By chihuahua0965 · New reply November 24, 2014
  • 14 replies
  • Hi, I have NF1 (very mild just the spots). My doctor told me that if I wanted to get pregnant that she suggests I see a genetic counselor. What exactly does this person do ...


  • By billi3 · New reply November 20, 2014
  • 9 replies
  • I was wondering if any other expecting mummy's out there have Noticed that their cafaulaits are either fading or disaperring all together as mine Are I have over 300, now im not complaing or anything ...

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