NF1

[anniedoodle]

Hello , new to this part of baby and bump but just wondered if anyone has a friend/family member with Neurofibromatosis type 1 , and how they cope from day to day . My son is 6 and has been diagnosed with having NF1 for 3 years now , can't find anyone local who has it to talk to so thought id try on here.
Feel free to get intouch if anyone has the same condition and can give some advice/lend an ear

 

[Marleysgirl]

Hi there, I did read your post but I'm afraid I cannot help. Didn't want to read & run!

 

[AriannasMama]

NF1 runs on my dad's side of the family, my grandmother and father have it, so do I and my daughter . We've all been blessed with very mild cases though and haven't had any problems with it. PM me if you have any questions, hopefully I can help!

The children's tumor foundation is a great website where you can get in touch with others who are dealing with NF as well.

 

[anniedoodle]

NF1 runs on my dad's side of the family, my grandmother and father have it, so do I and my daughter . We've all been blessed with very mild cases though and haven't had any problems with it. PM me if you have any questions, hopefully I can help!

The children's tumor foundation is a great website where you can get in touch with others who are dealing with NF as well.

Thanks so much for your reply , i'll be sending you a pm soon with some questions if thats still ok xx

 

[MollieMay]

Hello! I have Nf1. Would love to talk my msn is [email protected] if you want to mail me. xx

 

[pearls0704]

Hi i have nf1 and my might have it too dont know just yet it would be nice to chat to anyone with or affected by nf