Neurofibromatosis NF1 struggle

[@godschild2887]

I pray for us all.There needs to be more awareness about this genetic disorder. My spirit in my teens kept saying the number 17. So I prayed for my son's safety as he was an unruly child😊 But it was the only thing I could think and it was negative. But prayer does help. When I found out what I have, I was only told that it's NF1. So I got home worried and cone to find out my 17th Chromosome is defective. I told a doctor about it and she looked at me crazily. As I waited in lobby for my paperwork I gazed across the street and smack in the center of a street light pile is a yellow sticker with the number 17 on it. When the nurse comes back to me I escorted her to the window and told her to look at the pole she didn't get it untill I said the sticker. She could only stare in shockable awe. Scared me one good time is when the black family died on the boat..... 17 of them. I could only say a prayer that they are my guardian angels. Wired differently we all are but mine is causing severe psychological issues😑

[@browniethepirate23]

You're an amazing person! I have NF 1, and I'm the only one in my family for all I know. My mom was adopted, so there could be a chance that I got it from a family member there. But I will never know. I was diagnosed when I was 4, but my parents didn't tell me about it until I was about 13 (I'm 24 now). When I was Jr. high school that's when I got teased the worst. I do have an L.D., and I was held back in two grades in elementary school, causing me to graduate two years late. When I was in the 7th grade other kids said that I looked diseased. Some asked me if I had cancer because of the tumors sticking from my neck. I wore a lot of long sleeved shirts because my arms are loaded with neurofibromas I've gone to a few NF events in the past few years, and that's a huge deal for me because it's my own thing really. After watching a few of these videos and yours I might make one myself. I've thought about doing it before, but I have zero confidence most of the time. SO thank you for sharing :)

[@TechnicallyLenard]

Great video! I too have NF, and I am legally blind as a result of it. I have begun to develop growths on my arms and such as an adult. This disease is horrible!

[@JazZmineMadu]

I have NF 1, I'm glad I found your channel

[@tracymam1]

thank you so much :)

[@lovelylady0200]

wow, I never knew that! I want to join the Navy myself but didn't knew that!

[@nikothecroat]

I Like your video. I also have nf1 like yours. I'm thinking of going to the army so if i go. I will not tell them that i have it.

[@ConfusedGirlButSmartDude]

I have NF1. I have the café u lait spots all over my body, a deformed neck-bone, a plexiform on my neck/face, as well as a ever so slightly curved spine. It is quite painful but I have to deal with it. The worst part of having NF is defiantly the MRI scans

[@jennifervalle8895]

+Brandon and Melissa yes i had it all my life. same here. cause sometimes people dont understande. and it nices finding people who can relata

[@Rehema3]

Thank you very You are giving me hope because I have neurofibromatosis f1 But they’re not growing up since I was 5

[@danielhorrocks3189]

i also have nf1 I have everything to do with nf1 but I have never let that stop me no matter what people say when I was 2 years old my mum got told I will not be able to walk or talk but it never stoped me I am walking and talking and will be starting work as a chef soon never let anything get in your way. if someone says you can not do something just try and never give up.

[@Chevyspeed337]

Do you have a Facebook so we share stories.

[@danielhorrocks3189]

yes I do keven where are u from

[@Chevyspeed337]

United States

[@danielhorrocks3189]

Keven LaCombe I am from uk u can try and find us do not know if you be able to add us

[@Chevyspeed337]

Just go on Facebook and I m the first one. I think

[@tracymam1]

thank ya so much

[@joyking5470]

I have Nf1 also nun of my family have it but me ... this can happen to ... I have the birth marks all over.. I also recently been getting pain in my back but it wasn't as bad when I was 23 im 26 and it's hard cus there's nothing to do cus I have Nf and the pain never go away stay there but... I been with Nf1 for long time fond out when I was 5 years old I have a tumor on my ring side of my in side my head there's tumor but it's Stable Dr. Say so my life been good I graduated from high school I got awesome hubby he love me for me ... and he ready for what to come and be there for me cus we don't knoe what I looking in to with the few years down the road.... but just live life don't take it for granted

[@MalloryJayne]

i also have a lower from of NF1 too. have my spots. which i love!

[@evilprincess]

me to and I have nf1

[@jennifervalle8895]

I have nf1 too. but never give up on your dreams.

[@brandonandmelissa4307]

Same here! Have you had it all your life? Been trying to look for people who have it too. I always wanted someone I could connect to that understands

[@SAndSPictures]

I have NF1 also. My tumor is on my brain. I have the cafe spots too. Nothing too major!

[@tracymam1]

thanks

[@Rickberg1966]

I have NF1 Just sayin Hello to everybody out their , Cool vide Thanks for Sharing

[@godschild2887]

Sufferer severely bad. And the left ring finger hurts all in my finger up my palm up my arm and into my neck and shoulder. I cry for the future for where these things are growing. Doctors treat me like crap and assume I am making things up. Visual tumors and I asked a doctor to remove one main one in my finger. He told me no!! And that the symptoms I'm telling him are the reasons for my arm. He kicked my nose in and I was out of his office I 2-3 minuets top!!! Receptionist coyld only look down with a sorry.... she must know how he operates. Migraines are tough and I fear them in my head. Ears ring all the time and many nights I don't sleep from the pain and there isn't a pain med that helped. Couldn't join the Army either. It's a terrible disease. And it alters my mental state. Back and neck aches. Sad thing is not one doctor knew until about 2008-0009. And I am 43. So I've been highly neglected by medical practitioners. Uterine fibroids and cyst ovaries. 2 surgeries one ovary left and a 2x size uterus. Never can have children for the risks..... I want to ask God questions. Why me? But to ask God is rude right?

[@indirabhowmik6184]

I have NF1 too. I have spot all over my face &body. Tumors all over my body. People ask me all the time, I say I like polka dot print, so got it printed on my body.

[@lildiamond1989]

I understand what you going like you I wanted to go to the army I did 4 years of JROTC army, it sucks big time I been thinking about becoming a cop or doctor not sure I'm stuck in between the two what you decide to do go ahead and do it we know this illness held us back far too long

[@danielhorrocks3189]

do not let anything stop you live your life and get the job u want

[@skittlezblueeye]

Thank you I wanted to Joni. The navy but could not cuss I have NF thank you for sharing

[@skittlezblueeye]

***** Thank you thank you for sharing as well what stage of an F do you have I have NF1 and nf2

[@ImaniGabrielle]

i have it too, i posted a video response with my struggle with it

[@martialartsnerd7673]

In elementary school and midddle school people are ignotant and want to make other's feel low about them selves. For me when I got to high school and wore short shorts no one really thought much of it.

[@Smeeks4]

I'm 24 I have nf1 and I have the lowest form of it to I struggle with reading and spelling I have a so forgive me if I spell anything wrong 😕 I have a non harmful cysts in the back of my head that I had surgery for and scoliosis surgery. I never got bullied in school for having the cafe spot so I don't know how that feels so I'm sorry for that. Thank you for sharing. #nfstrong

[@zyarewinn1854]

i have nf1 , my tumor is on my hip .

[@charleneowen9649]

I have NF1 also, my son also has it, he also has non cancerous tumors in his eyes I think there called lynch Nodes

[@candraorvis8304]

my NF1 birth marks are on my shoulders and they are actually so beautiful. I also have 1 on my neck/chin but yeah it hasn't effected me too much. i have a lazy eye as well but its not that noticeable but hopefully i can get glasses or something soon to fix it.

[@AndreaCosco]

wow our stories is very similar

[@tracydorsey5957]

update I had surgery for a tumor in my arm again

[@anik6699]

I have also NF1,I live in Bangladesh,I have lots of tumors one them is very big.

[@carlosfilms6357]

I have NF1, only one in my family. I have a low one, it was only one tumor in my left eye (not effecting it). Now my tumor is gone!

[@anik6699]

I have many tumours shape like the scar on your hand.But how do I will know I am getting nerve damage?

[@jenniferlaroche9235]

You are a beautiful and strong woman to your children. Keep up your chin up, I'm sure you will find something soon. I'm a mother of 3 and just found out that I have NF1 last October. Thank the Lord I'm the only one in the family that has it. I'm also a bit older than you, pushing 41!!! LOL! I have tumors on my nerve roots starting on my neck and on down past my tailbone both on the right and left side of my spine. I'm starting to have problems with walking, which sort of sucks. So, I've been looking on the internet for the best possible wheelchair I can get my hand on. I'm hoping that everything is looking up for you since your video. If you want to email me that's fine. [e-mail] always here if you need to vent some more or just need a friend. :0)

[@nolberto2012]

i also Neurofibromatosis NF1 my mom is also has it, she having surgery on wednesday to get some remove

[@ellekay5935]

i am a nf1 sister, my new channel is about to launch.nf1 centred. xx

[@Billy2ndtimeatfame]

I watched your video and I'm also suffering from a small condition of NF-1. it also effects my son. But I've still managed to bounce back from all the struggles with the condition. if you want to be friends on Facebook let me know. i also have buddies in Texas. Facebook name is WILLIAM VICTOR SHERMAN JR.

[@pasta2012]

I am the only one in my family including extended family that has NF. Luckily for me, my case is very very mild, but I am concerned about having kids, as the doctors told me that I had a 50/50 chance of passing it down to my kids and they don't know the severity of it. Anyone here have any experience with that?

[@sanketp123]

Astha Patel i had minor problem too. i had, made lots of researh it just depends on our luck and gods blessing. i made lots of research and found something that helps to stop growing new nf1.....and it may help to shrink for longer run. you can reply me for more info.

[@ashleydelmonico3538]

Sanket Patel Me and my girl just had our son Michael 15 months ago. She has it and her father has it as well. He has the spots and was diagnosed nf1. He's had trouble with hitting the stages he's supposed to in time. 15 months and still not walking. We pray this isn't a learning disability that is going to effect him as he gets older. I always take comfort in the fact that he is happy and doesn't have a care in the world. He leaves all of the worrying for us. That lil shit 😂 bottom line don't let it stop you from having kids. They'll be beautiful and perfect.

[@nigirisushi678]

i have nf1.

[@kirapeterson5845]

I have NF1 and my doctor said there's something that looks like it could become a tumor. Its been a year and she has told me nothing about it yet

[@patiencefrost7992]

i have it and i dont let people tell me what i can and cant do with my life i have bot now that i am older

[@courtneyrivera998]

i have nf and my son has it too.

[@evilprincess]

I have nf1 to and my health been sooo bad

[@ashleighwatson3084]

with nf1 you can have the tumors that devlop on your skin my mother and grand father do. i also have nf1 but i dont have the tumors on my skin and im 22 but it can develop at any time.

[@doriansims1]

updates?

[@TheSdeatherage]

I have a nf1 tumor in my brain

[@trishadavi9807]

I have NF1 too and i´m from Germany, so my english is not so good. Im sorry :) I have nf1 since my birth. In my family im the only one with NF1. Its not easy to speek with people without this kind of illnes. We need to speek about our illness, there many things that healthy people cant understand. Sind hier Leute aus Deutschland, mit denen man sich unterhalten könnte? Sich über Ängste Sorgen Gedanken Erfolge Schwangerschaft ,Kinderwunsch und Erfahrungen mit Ärzten austauschen könnte? :) ich würde mich sehr freuen wenn sich jemand melden würde:) Greetings from Germany STAY STRONG

[@theanimalkeaper]

Trisha Davi hi I'm from Scotland and if you want to talk tell me and il give you my kik username. Do you want to talk?

[@miriamgrube5059]

Hey, ich komme auch aus Deutschland und habe NF1. Wenn du magst melde dich doch. Liebe Grüße Miri [e-mail]

[@trishadavi9807]

Mini Mixers Sorry for my late answer :/ I can give you my Email so we can write ? :)

[@evilprincess]

I have nf1 and mine is bad to...

[@ruthiepalomares3]

hello do you get any symptoms with it?

[@felrenee1]

I just found out that my 11 month old son has NF1 :-(

[@2princessPrince]

Hi I have nf

[@patricemcknight6782]

If your mom has it it's not spontaneous,you would have to be the very first which I was mother father does not have it

[@car24dude]

Please redo your video and speak into the microphone. I had to turn up my speakers up to 80 to understand you. Take care and have a bless one.

[@nolberto2012]

i also Neurofibromatosis NF1 my mom is also has it, she having surgery on wednesday to get some remove