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only one in my family with nf

mattdclarke1
0 Recommendations

hi i would like to know if there is anyone else who is the only one in there family to have nf because i am please let me know if your out there

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Cancer Pain Hydrocephalus Schwannomatosis

70 replies

razgirl85

I am the only one in my family with NF, my parents don't have it. It was a new mutation...

mattdclarke1

thats the same as me want to know how this happened as its supposed to be passed on ?

razgirl85

yes but they say that 50% of the time it is a new mutation

Lrnx33

I am the only one too

RHasan

Yeah sister has NF1..Only she was diagnosed by NF in our family.

CalebS

I am the only one. Although I think my grandfather MIGHT have had a very mild case of it after noticing some of his tumors before he passed away. My case is also pretty mild, although I am developing more signs as I get older.

Jaidyn16

My daughter who is 5 has been the only one known in our family (both sides) to have it ever! so you are not out of the norm!

kathyjulesmom

MY son Jullian 14 is the only one.I have 3 other children no NF and not me or Dad.

GirlA

I am the only one in my family with NF.

luvzmutt

I am the only one too, and like you, Caleb, I am getting more signs as I get older. (I'm 45)

caringfriend

I am the only one too. (I'm the youngest of 5 kids) I did pass it on to my son, who is now 24; the only "signs" are the birthmarks and that he has learning disabilities; however with a lot of help in school and modified programs graduated with a solid B average!

jelm

I'd never heard of NF until my son was diagnosed with NF2. He was 6 at the time & lt eye blindness lead to MRI's and NF2 was diagnosed. He's the only one in our family. He's 12 now and lost his lt hand function last year due to schwannomas.

gigglebox

Yep I'm a mutant too. My symptoms have just gotten worse in the past year or two. Nobody really understands what i am going through. That' the really tough part for me.

anthony204

Same with me the only LUCKY ONE with it

dragonfly1980

I to was a new mutation. Nobody eles in my family untill I had passed it on to my daughter. She is 6 years old now. I know how hard it is to be a new mutation and feel alone in it.

Dogsrule

Same here too, I have 8 siblings and the only one with this, parents, grandparents DON"T HAVE it either..I decided not to pass it on it stops with me,

mattdclarke1

im a little better now knowing that im not alone i have noticted that mines getting worse as i get older off to have some lumps cut out in two weeks from my face because it seems to be worse there getting bigger by the month anyway take care everyone and thanks for the support

emleczko16

yup me too...gene mutation

NFinNO

Apparently I'm a new mutation. I'm the only one, too, as far as I know. I never heard of NF until my diagnosis, when I was in my early 30s.
NFinNO

mattdclarke1

i can not get my head around the amount of you guys and girls finding out about your nf at a late stage in your life i was told when i was six years old thats when i meet dr benson in oxford he told me and my mum and dad all about nf and sent me to a gene clinc that was back in `1982 and now you lead the way

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