Neurofibromatosis (NF1) Awareness by Naomi D'Amato.

[TimmyBawesome]

i have it and i dont have any muscle tissue on the left foot...

[AidilPutra123]

I also have NF1 :(

I see there other people too have this genetic illness

[UponYourFarewell2]

u must have a big heart(:

[babycricket522]

I have it

[sillyscott2]

nf1 i have it

[AMERICA5833]

nf

[AMERICA5833]

nf

[AMERICA5833]

nf



[ayacardenas]

Me too!! I als have NF1

[alwaysgrandmasgirl]

I have NF1, no one in my family has it.

[akiss2give]

I also have NF1 and found out after my 3rd child & was in pain, MRI showed too many tumors to count and they dont know how to help me, the pain can be so unbarable sometimes, so my doc is sending me to sweetish med center for Neurosurgery and radiation therapy bcuz nothing has worked, I live in Silverdale wa and just found out there is a NF foudation in Kent Wa an hour away, my doc put in a consult to see them, thanks for sharing your story not many people understand. I have to rest most days.

[getitdonedunning]

@akiss2give Is the Swedish Med Center from Silverdale Sweden? I spent time in Silverdale Sweden back in the 1980's.

[sohelpijah]

i also have nf1, so far i've been lucky but i do have some problems with school and such, just thinking stuff through but i made it to college, and i also have some of the cafe ole spots present on my body

[alybaby55]

hi everybody on this page am 16 and i have nf type1

ive had it my ho life but i wanna share a lil something

i recently learnd that there is not that many nf doctors and

lucky me i have one less then 45 min away i think that everybody that has nf

should see a doctor just nf so that they understand u better ok sooo if u ever have to travle to c ur nf doctor wich i learnd ppl do i think u should vist a doctor

she is located in miami childrens hospital plzzzzz write back if u have nf=]

[generationkill791]

i have nf1 and its great you are informing peeps about this

[allskulls100]

I have it too I hate the countless mris and the wondering if another fybroma will appear some how

[stavvve]

You are a real princess!! I'm sure Ethan is proud of having you as his older sister.

[AshleyRoxMaSox24]

Great job on the video! My daughter is 21 and was diagnosed with NF1 when she was just a baby. We also go to Childrens Hospital in Boston, they are the best. I had never heared of NF until she was diagnosed and I just want to thank you for helping to educate people about NF.

[theafterlife]

This is so great. I know a boy who has this. This video really helped me out by teaching me more.

[ElfenLied1029]

i have this. it has made my life fucking miserable.

[Dintiz]

I wish the best for your brother, I have seen really bad cases of this condition and I hope he doesn't have it as servere as I have seen. You are a very pretty girl and I'm sure you will get alot of people behind for funds and I'm sure alot of people are praying for your yonger brother. P.S. Good Luck on your violin playing, sence your gifted in music

you may also want to try other instruments aswell, Have a nice day :).

[EEliscia]

i have NF type one, i was born with, with it i got a bone missing in my left arm, i got learing and reading problems, i have problems with my legs they turn in when i walk, back problems, i have 9 surgerys on my arm and 1 one my leg and i got another on coming up for my left leg, i get headackes and at school i get pick on the way i walk

[ger36]

i have nf1 too

[ger36]

i have nf1 too

[jrad196346nf1]

AWSOME JOB on this video

[LILmoneymaker36504]

i have nf but i dont have any major problems, i just have cafalio ( idk how to spell it ) on my stomach and a few on my arms

[lililuvsyuni16]

i have nf too

[KudoKaitou]

@lililuvsyuni16 Which one. NF1? or NF2.

I got NF2 since i was born. and now it Im 18 Y.O.

[KudoKaitou]

@lililuvsyuni16 Wait.. my bad, i mean NF1 not NF2

[altargirl9]

if you have nf1...can you get seizures?

[altargirl9]

if you have nf1...can you get seizures?

[lililuvsyuni16]

@altargirl9 no i dnt think so i havnt had any

[nadine1524]

i have nf1 too i got a canerous tumour and had to get cut off

[foxchick09]

i have nf1 in my left leg and i had my foot cutt off inever rlly tlk to people tht have it.

[Oisinmagic]

i too suffer from nf1 its hard to make friends as people dont understand if i can pluck up the courage tho i can perform a magic trick which breaks the ice makin it easier to chat. but still in uk people are still nieve and think ur contagous. well they got the problem not us. :)

[beebee890]

i have nf 1 too

[rahulguptarahulgupta]

my niece 2.5 yr old having nf1 in brain, spine, lungs. homeopathy s the only treatment available, it acan stop growth od tumors

[13Wiers]

I have NF! to I have a large plexiform tumor on my right leg. I am in the hospital because its swollen and hot do you guys go too boston children's hospital?

[naomidamato123]

Yes. Five years ago, when Ethan was a year old, my family took him to Children's Hospital in Boston. Ethan's right eye was removed at that time and we met different doctors.

I hope that your leg gets the right treatment and that you get better.

[SuperBcp1]

@naomidamato123 got to love boston childrens is the best place to go for kids/teens (yes teens) with NF the have great doctors there.

[Meninacristina]

@13Wiers Hi, I had a HUGE plexiform on my leg which after putting up with it for over 20 years I decided to have surgery it weighed 5 pounds and I had over 150 stitches but it didn't hurt as much as I thought it would I still get pain now but it's not too bad I'm glad I had it done 'cos I can wear normal trousers(pants) without a big lump showing. I hope you're feeling better now.

[d34th1nj3ct]

ur cute lol ^^

[the11991]

hi i have nf type one and i really like your video and mabey sence u watched this u well understand u can die from this

[tracyterry]

hi Naomi! you're so cute! :)

[Millsyhibs]

an there is only 1 in 3,500 births

not now not any more

million of people are being born with this every day 35,000 bab ies are born with this genetic dis order every year and because it is in your brother then you and your two other sibling will have this or will appear in later life.

[Millsyhibs]

Ah now i have NF1 (Neuro-fibro-matosis)

i seen in your description that ethan WILL get facial disfigurement. this is not true in NF1 and It is most definate to happen in NF2.

SO who ever told you NF1 WILL cause facial difigurement has no clue.

i have had 7 operations due to NF1 in my 1 on leg, 3 onneck, 1 on arm, and 2 on my back. none whatsoever has caused any disfiguremen and none will and will not result in death.

But all my thoughts are with ethan and may he have a wonderful life.

marc

[SUPERMAN60440X]

they are right thats nf 2 not 1 1 is not as bad as 1 and there are cases and like leves from slight to bad in 1 and 2 i got Nf 1 and have it very slight im in to sports i use to play hockey and basketball so its not like nf2 where its disabling Nf1 moslty is small tumors can grow learing disablites if you get some disfugerment its usualy at birth i belive not sure about that one nf1 causes NON canceous tumors to grow where nf2 is by far alot worse and disabling