neurofibromatosis part 2

[ahleSunnah100]

thanks i have nf 1,this has helped me from low to getting high thanks

[gloria4271]

thank u for adding these videos, i m from inida and i too have a nf 1, i was 19yr old when i came to know about this, before that no doctor told me about this nf, when i have these spots since i was 3 yr old..sometimes life is really difficult with the nf as people look to u in a different way..

hope one day there wl be cure

[alybaby55]

i really dont like how u said the word but its ok first of

alll i have NF i think i have type 1

am not sure i have the good kinda I GUESS U CAN SAY IVE HAD IT SINCE I WAS LESS THEN A YEAR OLD noone in my family has it so somtimes i feel that they dont understand how it feels to have this extra peace of skin u cold sayy but i really wanna talk aboutt this sooo plz messag me

[jetsfan4life]

I also have nf1. Growing up and even now, I have never had genetic counseling. I am the only one in my family with it and I've always felt alone because I've felt no one can understand what I'm going through at all. In the last three years it's gotten worse though. Now I have tumors in the nerve roots of my spine and it hurts to sit, stand or walk most of the time.

[jetsfan4life]

I also have nf1. Growing up and even now, I have never had genectic counseling. I am the only one in my family with it and I've always felt alone because I've felt no one can understand what I'm going through at all. In the last three years it's gotten worse though. Now I have tumors in the nerve roots of my spine and it hurts to sit, stand or walk most of the time.

[energeticdragonfruit]

if there is anyone in edmonton alberta who also has this condition i would love to be able to talk to someone. pls message me

[ortegaatr2]

if anyone from new york ( long island) has this get at me i would love to talk to someone bout it

[curbotize]

I have NF1 and I'm 26 I've had only one surgery on a tumor on my leg because of a nerve that was getting pinched... as far as for other cysts none got bigger and none are getting bigger... its nice to find some people that share the same :)

[xXClaymore01Xx]

@curbotize did the pain from the tumor being on the nerve go on and off and gave a tearing pain if so I have a tumor on my side that hurt me bout a month and im geting surgery for it. I also have four tumors on my brain from NF I think I have type 2. And do you get anything called temporal lobe siezeures and would that give me trouble in geting my driver liscences or having a job I want to have.

[yankeegurl62]

what are your thoughts on NF1 and Astrocytomias? I've read that there may be a connection with the formation of tumors in the brain. Let me know..my daughter has JPA...and I was considering seeing if her Onocologist should run a blood test to see if she has the gene...just a thought...

[Fr3ya1996Babii33]

i have type one and live in the uk, i am 13 and alreeady had 2 ops coz of nf type one

[whooseyerdaddy]

hey is anyone from the uk with nf please contact me im 33 and have nf1 and im looking for places in the uk where i can meet other people with nf seams to be a lot in us and canada but not much in england

[alish234]

ME TOO i AM 18 AND HAVE NF i FOUND OUT WHEN i WAS NINE WHEN DID YOU FIND OUT

[ikerbeast666]

im 18 i had got nf too, i had spots and escolios but i haven never had any tumor or neurofibroma , i  prefer to ignore those things but sometimes i am afraid

[Curlyreetz]

im 23&have nf1,hav had 12 surgeries so far relating to it, startin with scoliosis, curving of the spine.i hav all those fibromas on ma chest,only little @ this stage,i jst freakout that they will grow bigger,or get more of them as i get older:( i also have the elephant thing from my knee down on my right leg,hide behind it by wearin pants all year round,can only wear jandals cos my heel cant fit into a shoe.i just neva look @ it, pray daily for healing or peace,1 day i'll get it.its so hard aye.

[babycham2006]

hopefully 1 day there will be a cure, i know how you feel though,i,m always checking for new fibromas, or seeing if they have grown, its not just a physicle condition, it affects you mentally as well, as i,m always checking and looking.

[karenawhittaker]

i have NF1 & NF 2 as do my daughters my sons didnt get it my 2 grand daughters are showing signs of it and my youngest daughter passed away in 2003 aged 9 due to a NF forming on her lung it turned to cancer and she passed 11months after it was diagnosed

[Hazekinse88]

hi karen, im very sorry to hear about you daughter.

i have nf 1 myself. i wish you and you and your family all the best in the future!

take care and godbless

[free512]

hi i have nf1 also no 1 in my family has this so far both my kids dont have it we found my 1st 1 when i was 16 it was bigger than a footbALL then i went 10 yrs with out a problem then in 1997 i went to john hopkins and 1 of the best neuro sugerns took out over 100 all is good now

[ninadbhatt]

when i become a doctor i promise to do lot of research in this direction + disorders of inborn metabolism disorders. These are not as prevalent as other disease so even though they are highly fatal diseases research company take them for granted i guess no money no motivation

[vilainpetitcrapaud]

Congratulation,your video explains very well the NF.I'm french. I have a neurofibromatosis.

I explain my life in my blog (in french) sorry! But you can read my NF poem in english and many other languages!!!: " the naughty little toad" It's easy to find it on internet Good luck and kind regards for people with NF Francis

[babycham2006]

thank you for your kind comments, i,ll have a look for your poem

[lady1955]

THANK YOU babycham2006 for posting this video...it's a 5 ***** star rating!

There is so much yet to be learned about NF1 and I hope one day there will be a way to reverse the progress of this genetic disorder...perhaps through gene manipulation while the affected child is still in the mothers womb. Two of my 3 sons have NF1. I learned (when I was 34 years old)I had this when my oldest son was diagnosed with NF1 in 1989. He was 11 when diagnosed.

[babycham2006]

thank you for your comments

[kerrymac197413]

I also have nf1 along with my 2 sons i only found out what it was called 8 years ago but grew up with the birthmarks all over my body.

i was shocked to find out my sons had it and when last may my son had a annual m.r.i i found out he had a brain tumour it was removed in a 8 hour operation but he pulled throught thanks to the good doctors in alder hey hospital he has no problems before the op and he is back to being a normal 7 year old boy.

[crazychyc]

I have nf one and haven't had much problem with it. I have mulitiple tumors under my skin and I have a tumor on my optic nerve which caused impaired vision. I pray for eveyrone who has this condition!

[HotGyal1011]

wow this video got to me i got nf type 2 and my motherj us passed away from it in 2006

[ihavenf1]

I sometimes wonder how bad it's going to get.

[imgetinoldr]

I sometimes wonder how bad it's going to get.

[babycham2006]

i know how you feel, its ok the docs saying dont worry, but its hard not to when you get new lumps.

[ihavenf1]

I sometimes wonder how bad my nf is going to get.

[babycham2006]

same here, every new lump i get, i start examining it, wondering if this one will grow bigger, or turn out cancerous, its a constant worry.

[asuicidal1]

one day at a time.

[Quizten08]

well ...I find it later on internet, but fhanks.

and everyboddy you as have facebook. join the grope "nf"

[Quizten08]

is that somboddy as now what this is fore song in the vido? who sing and the name of the song

[babycham2006]

tnx for watching, the song is called Everybody Hurts its by REM

[ikerbeast666]

sometimes i think that Nf is the caouse of all of my sorrows but seeing this images i can see that i am lucy between the unluckys

(sorry if the mesage is wrong , english is not my motherleangue)

[babycham2006]

its ok, i know where your coming from re your sorrows, sometimes feel there is no one to turn too

[jahlovebk]

I agree with Khp. I also have NF1 and at times I am angry, dont know what i would do if it was worst

[Quizten08]

the video was differcold to understand, I'm forme sweden and I my english is ok but not the best

I have NF1

[METALGOD3667]

My hearing is very bad due to the neuromas but still can function in a quiet setting. I have a lot of pain but painkillers daily help me cope most days. I am now 38 with one son---born the day of my sugery. So far he shows no signs of the disease and I pray he never does.

[babycham2006]

Hi tnx for the comments good luck with everything, hopefully one day there will be a cure for this

[METALGOD3667]

Hi. Great job on the vid. Very informative. I have type2. Bilateral accoustic neuromas and many spinal cords tumors also. I am the first in m family to get it. Spontaneous mutation. I am lucky as none are visible except for one growing under the bicep of my arm. I have had one surgery 14 years ago from brainstem to shoulderblades in the spinal cord. Luckily I still have full functions. Nothing has grown very quickly and I monitor them yearly with MRIs.

[sparton616]

thank you very much for the info. this really helped with a HUGE!!! report i was given in school. GOOD LUCK

[simonch123]

thank you

[iluvantanddec]

Neurofibromatosis is reli hard to cope with. thanks god i only have type 1 cuz type 2 is harder!

[babycham2006]

hi hope these videos help you cope, with nf, your not alone try stay positive

[khprincess]

yeah. thats the only thing i'm thankful about. i have nf 1. if i had nf 2, i'm sure

that i wouldn't be able to handle it

[squigglepiggles]

Well I'm story boarding my website about Neurofibromatosis

[babycham2006]

i might just do that, i,ll search for facts etc on nf2, i have nf1 so it was easier to make, hope this vid helps

[oldschoolsherdogger]

Nice video. You should make one for NF2.

[patrick87OB]

thank you

[squigglepiggles]

you too bab.

[babycham2006]

tnx for the comments good luck to all those affected

[squigglepiggles]

Its a Brill production,

[Steadno]

Very good production!

[godog6000]

thank you

[babycham2006]

top 1 hope it goes ok

[squigglepiggles]

I'm going to do a website as part of my Uni course on Neurofibromatosis

[squigglepiggles]

Well done

[babycham2006]

Hope this makes people understand