NF1 and pregnancy

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

Discussions

PGD question

little-laura
  • By little-laura · Posted March 6, 2011
  • 0 replies
  • hey guys I have looked into PGD somewhat and have found out funding for it covered by primary care trusts in the nhs is a postcode lottery..... Does anyone know how I cant find out which primary care ...

ivf question

jessifio
  • By jessifio · New reply March 5, 2011
  • 4 replies
  • Does anyone know about the ivf to rule of an nf child. Does insurance cover that? How well does it work ...

Starting Pgd ivf in Australia

Kimba21
  • By Kimba21 · Posted March 5, 2011
  • 0 replies
  • Hi all My hubby and I are in the early stages of starting Pgd ivf. What can I /we expect and any positive story's out there ...

Please Help Me

AussieGirl1
  • By AussieGirl1 · New reply February 24, 2011
  • 29 replies
  • Hello Everyone, I dont know what to do. I just found out im pregnant, i am on the pill so this is a big shock. I have NF1 and im scared ill pass the NF1 to my baby. i know i can do a test so see if the ...

IVF with PGD for NF

vikp
  • By vikp · New reply February 16, 2011
  • 24 replies
  • Hi, Some time ago I was very confused and I had a lot of questions in my mind regarding of having or not a baby. In the meantime I found out about a clinic in Prague, Czech Republic, that offered me the ...

IVF PGD - Starting the process and questions

magutah
  • By magutah · New reply February 15, 2011
  • 2 replies
  • For those who have started or already gone through with this process, I was hoping you could share some of your experience. I just had my initial consultation on Tuesday. Based on my age (36) and the ...

NF And Birth Control

mskrystal
  • By mskrystal · New reply February 13, 2011
  • 8 replies
  • I am 23 and am wondering how birth control has affected you. I have had 3 surgeries to remove a tumor from my spin and still have part on one remaning. I was wonder how birth control has affected you ...

Is it right or wrong of me to want children

mk75nf1
  • By mk75nf1 · New reply February 13, 2011
  • 26 replies
  • I'm a male and would love to have children one day, but is it right of me to want this. As you are aware there is a risk (50/50)% of me passing this disorder on. I would consider myself to have NF1 fairly ...

NF and wanting children

Nfgirl44
  • By Nfgirl44 · New reply February 8, 2011
  • 7 replies
  • I was thinking about having children and all I have is the cafe spots I never had a tumor before and I have no bumps on me. What are the effects during pregnancy if I decide to have children ...

Do you have feedback for a newbie?

Firstbornhelp
  • By Firstbornhelp · New reply January 23, 2011
  • 3 replies
  • I honestly do not know much about NF1, I do know that my father in law was diagnosed with this when he was in his teens and has several of the "lumps" covering his body. My husband and I are both 25 and ...

Donation of Placenta

karenf
  • By karenf · New reply December 16, 2010
  • 2 replies
  • Hello Everyone, I am due in 4 weeks. I have NF1, and my husband does not. Baby does not have NF1. I would like to donate my placenta to a Neurofibromatosis foundation or something of that nature. My husband ...

How to define severe or mild case NF1

malapupika
  • By malapupika · New reply December 15, 2010
  • 17 replies
  • Hello there:) I'm new to this community:) I' m 36 and I have Nf1 since 15. I had plenty of cafe a'ulaite spots, lots of fibromas under my skin and inside the body (eevr year i have Ultrasund checks of ...

Having a Baby with NF

KiaBuniNF
  • By KiaBuniNF · New reply December 14, 2010
  • 33 replies
  • I just want to know if there is any one out there who decided to have children knowing that they had NF. Me and my Soon to be Husband really want children. But im soo unsure if we even should.. He says ...

Makeing new baby NF free ?

Marijana
  • By Marijana · New reply November 17, 2010
  • 8 replies
  • Just reading some Italian forums, and they are talking about "taking some therapy" to prevent creating mutated gene in next pregnancy, to prevent to have a second NF child... Is it "invented story"? Is ...

urine and blood pregency test ( false negative?

MONIQUEIJ (Inactive)
  • By MONIQUEIJ (Inactive) · New reply November 16, 2010
  • 6 replies
  • I have several questions. ( forgive my lack of knowledge) 1. how many of you ( women with nf) got your menstruation (period) even though you who was in fact pregnant? 2. do mccune albright syndrome effect ...

Nf and pgd

sevinc
  • By sevinc · New reply November 15, 2010
  • 1 reply
  • Dear friends, I am a 30 year old woman and has given the decission of having a baby through pgd. What I really wonder is how the hormone injections will effect my nf1? Does anyone have any experience ...

pain in between shoulder blades

Tgormley
  • By Tgormley · New reply November 4, 2010
  • 5 replies
  • Jess is now 31 weeks prego and all has been perfect, except for heartburn and a pain in between her shoulder blades, which radiates into her neck and down her arm. I think this is just really bad heartburn ...

injects ethanol

maryy
  • By maryy · New reply October 25, 2010
  • 1 reply
  • hello maria are clear, I live in Italy and I am suffering from NF1, I wanted to know which doctor injects ethanol in America to reduce cutaneous neurofibromas because they are interested in coming to ...

Stuck In a Hard Spot

Niki09
  • By Niki09 · New reply October 12, 2010
  • 7 replies
  • Hello, I was diagnosed with NF1 when I was 7 years of age. I have a VERY mild case of NF1. I have only had surgery twice in relation to my condition. I do have bad headaches all day and all night pretty ...

any problems which forecast the future?

jovka
  • By jovka · New reply October 1, 2010
  • 12 replies
  • I wonder if any of you experienced pregnancy complications or sth strange during it that might have been a signal from your body that sth is wrong (gene). I have heard that that no spotting and nausea=healthy ...

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