Thread: Neurofibromatosis

Hi Ladies/Gentleman

Thought I would introduce myself,

I am looking to see if anyone has heard of / got Neurofibro matosis?

My little boy (9 months old) and myself have just been diagnosed with it and I am still coming to terms with it.

Have had Eye scans and little boy has had MRI Scans etc,

Look Forward to hearing from people

Love
Sharon
xx

hi sharon,
welcome to MO, i'm vicky...
i don't know anything about ur condition, but i hope u find some answers here to help u.....for u and ur little chap xxx

Hi Sharon, and to MO

I have no experience of Neurofibromatosis, but can understand you needing to come to terms with it.
Very pleased to meet you, and hope to chat more soon. Hope someone on here can give you more advice than I can

Hi Sharon welcome too mo.I hope you can get some answers too you & your sons condition soon.

Hello, welcome.

hey we are in the same situation as you my 9mth old son has psudoarthrosis of the tibia and NF is the likely cause.

Originally Posted by wonderwoman

Hi Ladies/Gentleman

Thought I would introduce myself,

I am looking to see if anyone has heard of / got Neurofibro matosis?

My little boy (9 months old) and myself have just been diagnosed with it and I am still coming to terms with it.

Have had Eye scans and little boy has had MRI Scans etc,

Look Forward to hearing from people

Love
Sharon
xx

hey thought i would mail you, my son is 9mths and has psudoarthrosis of the tibia and NF is the likely cause he is going to be tested for it. if you would like to contact me and my partner our email address is mr_orange21uk@yahoo.com. be nice to talk to someone in the same situation.

hi. dont know anything about neurowotsits, but thought i'd just point out that wonderwoman is not a regular poster here, so its possible she might not respond to your request for contact.

(of course, she may be a silent reader, in which case i'll keep my neb out )