Neurofibromatosis 1

[Michelle36]

Hello
I'm a new member and wanted to say a bit about myself and a big hello to the group. I'm in Croydon, Uk and have 6 children, 5 of whom live with me. My oldest is 19 and lives with his girlfriend opposite me.

My youngest son, who is 4, was diagnosed with neurofibromatosis 1 two weeks ago today. Is there anyone on this site who has had contact with this condition? It is to do with chromosome 17 and varies a lot from child to child. My son has delayed speech and adhd which goes with the condition and over 30 cafe-au-lait spots which was the signal that the condition was present. Ilove him to bits, he's the baby of the family and we all adore him. He inherited this from his dad who also has cafe-au-lait spots so no guessing where he got it from.
Anyway enough of my rambling, I'd love to hear back from you all so please get typing )
Michelle
x

Welcome! My cousin's cousin has this- and is doing well!

My eldest son (5) has autism so I'm on the SN boards a lot

Hi Michelle!

I don't know anything about neuro fibromatosis but just wanted to say hello and welcome. I have 2 boys. The eldest is nearly 4yrs old and has high-functioning autism. I can usually be found posting or lurking on the Special Needs board.

Hi Michelle. Im 24 and have nf1 and have a two year old daughter with the same condition. Nobody in my family have the condition. Would love to hear from you

My dad has NF, and it was raised as a possible for Sam, but never taken further.

Have you spoken to the NF support group? Tey're pretty fab.

Welcome to the site, I'm sure you'll find lots of support and laughs here

hiya - I too know nothing about this condition but wanted to say hi and welcome. I am the token ( I suspect) aussie on the sn boards. I have two dds - one who is 4 and she has down syndrome and another dd who is 20 months turning 4