Neurofibromatosis

[livingwith]

I was born with a bowed left tibia that my parents noticed at 3 months of age. By 8 months of age my leg was placed in a long plaster cast to protect it. It broke in a cast about 2 weeks after. I have had many operatins since infancy to strighten and mend it.. with this condition it never mends. I had bones taken out of my hip at age 8 and again at age 13. I had wore a long heavy metal brace also when I was not in a cast. I was in a cast for up to 3 years at a time for each operation. I had pins...Read the full article

[neviebell]

Snowball
Thank you for answering my post. Right now I am going through a lot of tests to see if
I have an Neurofibromatosis in my right leg it is very painfull.
I have the tumors over 90% of my body I am lucky that I do not have to many on my face.
I have four Children 3 boys one Girl I have lots of Grand children and Great Grand children
I have four sisters and 5 brothers two are half brothers no one in the family has NF
I passed it on to my son also my grand daughter.
I would like to correspond with you maybe we can help each other.
Eva

[neviebell]

Snowbear
Sorry I got your name wrong. I do not know how to send you my e-mail i don't want to
post it where everyone can read it do you know how to do that?
I had my MRI this morning I won't know till my Doctor is back from Vacation
what the results are.
I hate having all these bumps on me. My Husband of 18 years never forgets to tell me
how much he loves me every night for 18 years he always tells me good night beautiful
he does not see the bumps but I do, he tells me I don't see the bumps because I waited for you all my life for you he is a great guy I am so lucky.
I am 69 years old and live in Idaho we used to live in California till it got to expiencive to live there
Hope to here from you soon Eva.

[snowbear]

Hello there Eva,Yes my user name is snowbear..I would like to communicte with you too. But have no idea how to send my email personally. I hope you are doing ok.