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Hi, my younger sister was diagnosed with neurofibromatosis recently and she is scheduled for surgery after the holidays. In the meantime, I’m hoping to find any information on this condition that might help me give her I guess some proof that regardless of her condition, she still can have future unrelated to this horrible disease. She is 8 and understands quite a lot and it’s awful for me as is to her to talk about her condition (she has NF-1) when all that really is to it are horrible symptoms that might or might not happen to her. All I can say to comfort her now is that some people have easier NF than others, but really no one, even her doctor at this point, can tell how her neurofibromatosis will develop in the future.

Thanks for your help!

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Hello, Jill.

I know a little bit about neurofibromatosis because of Gillian Anderson, star of my favorite show "The X-files".

Her brother died from NF, so she became one of the main fundraiser for this disease. 

As far as I know, Robert Redford has a mild case of neurofibromatosis. Also, one of the main actresses from Degrassi Next Generation, Munya Mony Yassir, has a NF.

She is disabled, but still enjoys in painting and singing.

I wish you and your sister to be brave and best luck with operation.

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Nick Gilbert, the son of the owner of the Cleveland Cavaliers, has NF. He is very public and outspoken about it.
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I was born with NF 1 the right side of my face is affected by the tumors.I had an optic glioma, never had vision in right eye which was removed @ age 8 yrs due to the tumors I have had a prosthetic eye since then, but since I never had vision in the right eye.I don't miss it . can't miss something you've never had.had.Also at 5mths old I had exploratory brain surgery to check for brain tumors as they didn't have the technology back in the 60's the do now.Fortunately No tumors were found.Though I have had numerous operations to remove tumors.I was also told by a doctor as I'm sure you both already know there is no cure.but it can be corrected.
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It's different from person to person. Most importantly it's not a disease, it's a genetic disorder. It is a gene mutation that affects 1 in 3000 people. It is usually passed on though birth but sometimes just pops up with no family history of it. All you can do is take one day at a time and enjoy life. I'm and 40 yrs old and have nf1 I also have 2 sisters with it. It was passed down from my mom. The great thing is now with IVF I was able to have a child without passing the gene on.
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I have been in 6 movies and I have NF
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I have NF1 so no quite a lot
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HI JILL I call myself Miss SAM but that is not my real name.. first of I am way over 21 YEARS old and I have head Neurofibromatosis all my life it's on the ( L ) side of my face .the older I get the more down in the dumps I get .. I have hade so many SURGERYS there are not any fingers and toes left to count .. TO me that NF is a real late me downer .. BUT I can see that I am not the only one out here with that PROBEAM .. With all the smart DR "S out there it looks like one of them cud STOP it .... I have run out of money and my INS only pays 80% and if the bill is 20 K too 40 k I'M left owing money on top of money .. what I'M saying is I'V just giving UP on the SURGERYS for me they work for a short time .. BUT if they work for some one els then I'LL be happy for them .. GOOD LUCK to all that has NF in getting the help you need going out from one that has it .. know one now's the HELL that eye have put thro in my life ..I'DD NOT wish this on ((( NO ONE not even on the one's that I my not like ))) 07 / 07 / 2015 @4:25 PM EST
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HI Mark from 23 Days back .....How did you luck up on getting in the MOVIES and having NF ???? CAN you EXPLANE this to me IDD like to have that type of luck From the one that call name of Miss SAM ...Witch MOVIES did you play in ?????
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HI JILL I have NF and it is BUMER I Have hade it all my life .and it has made me a vary ugly looking man on the out side . But I tray to keep looking up but it is vary hard to do.. you may be asking how old I am I turned 65 this may 2015 if look's was book's I'DD get LOOK'T at more AFTAN .. I do I have this to say NEUROFIBROMATOSIS 4 me is a AVREY day living HELL .. IDD give my ( L ) arm not to have this NF.. only we that do have it knows that we must tray to live with it ..... MY NF started at age 4 and it is stall with me to this day .there is no STOPING it BUT I think that the only way to stop it is not to have any children to keep it going ... THIS is way I have NO children of my OWEN the blood line stops with me and that ##### sink's that NEUROFIBROMATOSIS I will be killing it when the time come's for me to die that is when the good LORD call's me home ... PS ( NO ) operation will work 4 I am out of money and out of time .. if y'all want my name it Charles ...PPS please don't cry 4 me and don't say your sorry 4 me ..I just don't need it ..DO I sound like I mad at the world my be / my be NOT ...OWNE'Y I know that ....All of you tray to have a nice day and I will tray to do the same
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HI Mark IT'S Me one more time . I have NOT seen a REPLY from you .Like I said I have NF ALSOW and I fined it to be a vary bad BUMER to me IDD like to know witch move's that you played in ??? Will you PLEASE inform of witch one's ... I DO THANK YOU FOR YOUR TIME PLEASE HAVE A NICE DAY :-) from (( SAM ))
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Hello
I also have NF 1
I belong to a online support group
We have members world wide
All ages are welcome

 

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Jill, there is a lot of information available. I was diagnosed with NF1 when I was 13, I am now 44. I have lead a very normal and mostly healthy life. It is very scary when you first get the diagnosis, that I understand. You and your family are in the generation where information is at your finger tips. I will be more than happier to help answer anything that I can. Each case is different, I am blessed compared to most. I am a genetic mutation, the only major visible signs that I have it, is a large mass on my right arm. I have other signs, but they are mostly inside. Here are a couple of websites I suggest you look at.
www.ctf.org www.nfnetwork.org

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I am a 65 year old female with NF1 also. Everyone with it is born with it. Chromosome #17 is not normal. I am the first in the family. You can get a lot of information looking up chromosome 17.All ny kids have it as well as grandkids. There is nothing to stop it other than don't reproduce. Tumors everywhere ! Ugly.
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Hi my is Burnee can u tx me I have nf but don't know what if I have case one or two they hurt sometimes

some one please I have no and doc

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