What a mature, compassion man. I am humbled by his heart.

The persons taking cell phone video and laughing are the ones with the problem; not you guys. Thank you for telling us about this.

Kevyn was my best friend in high school. He's one of the smartest most community dedicated men I've ever met. Being mildly autistic and nearly blind myself I never understood what the big deal was. I wish I stayed in touch with him.

I also have NF1. More needs to be done to raise awareness of this condition. I was 31 when I was diagnosed and the majority of doctors I have encountered have limited knowledge of the condition. Pain has been a major factor especially in my hands, yet I consider myself fortunate as NF can range from seemingly mild to major in others.

@ethanbarry4736

Жыл бұрын

I have 1 Nf too

@keyanamurray4144

11 ай бұрын

@@ethanbarry4736 same

@ramnareshjharamya

3 ай бұрын

Maam i also suffering from this I feel not well I nit feel comfortable

@ramnareshjharamya

3 ай бұрын

Maam I also suffering from this

Carrie, I had to write because I understand. I have been in that situation, many times and school was as just as bad. I can't understand how in this time how ignorant people can be. I have had 8 brain tumors due this-NF I have NF 1 and NF 2 I get tumors that grow on the in side and a lot on the out side but ever time people do things I know it hurts very much, the only the I can do is hand it to the LORD MY CREATOR! You have a very sweet family be proud! GOD BLESS!

I thought i would never find anyone with this disorder i have been living with this for 34 years. i know the pain

I have NF1, but it's very mild. I didn't get it from my parents, it was a genetic mutation. My biggest tumor is on my left thigh. Hope I can meet this guy someday so I can give him a hug. :)

@Smol_beryy

Жыл бұрын

Same my biggest is in between my eyes in my head

@Domobury

10 ай бұрын

My son has it he has no tumors yet he’s 3 . Only speech delay. Still leaning about this disease. When did you guys get your tumor

@Crissa42082

9 ай бұрын

Mine is mild too. I didn’t get any neurofibromas until I was pregnant. My youngest has the cafe au lait spots exactly like mine except she has way less.

@MustyBastard

4 ай бұрын

Me too. Sadly even though it is mutation for us, it still gets worse with age. As a teen I had no bumps on my face. Now at 39 I probably have 50

Well it has been 4yrs since this aired. This past Sunday Feb 7th through Tuesday of 2016 I just got back from Washington DC Advocating federal funding for NF. Along with 58 other people from around the country. we visited our reps from each of our states. It was a very exciting experience. For all of us who have Nf1, Nf2 and Schwannomatosis.

@authorlydiagreen1862

8 жыл бұрын

following, I have nf1

@na5995

8 жыл бұрын

+KevynJ4838 i just watched this video i am a 34 year old lady living with nf1 . I try to be strong about it when people point and stare. Some kids dont even want to stand on the side of me, and they laugh thats what hurt, because they dont want to be educated about my disorder but to pick at me. I am from the Bahamas and would like to do something. I wish i had help here maybe your funding can help us here there are a few people here with the disorder.

@kaykay-nc8fj

6 жыл бұрын

KevynJ4838 wow ok i have disease

My 5 year old is an NF sufferer. We just got out of the hospital in February for a tumor embedded in his spine. It's a horrible disease and it takes lives. I am grateful for this man's story (though hard) because he is bringing attention to the battle so many fight each day.

@eduardodiaz1017

4 ай бұрын

Please take a herb called Ashwaganda, it will help you find RELAXING YOUR MIND and Body ❤, thank you and all my BLESSINGS ❤

Hello My Tasha. I was diagnosed of neurofibromatosis type 1 when I was 16 weeks old. My birth mom passway of this diease. I have tumbor on kinda by my mouth half the people said "whats that thing on your chin". I have migraines alot and I live everything with this. Stay Strong!! Keep your Head up!!

Hi Kevyn...nf2 here. So my balance is terrible and people look at me like I’m intoxicated...annoying but I just blow it off. I’m a busy gal ams don’t have time to invest in people’s ignorance assumptions. You are blessed with a loving family 👍🏻

Hi my name is Jennifer I have Neurofibromatosis I'm 41 my mom and sister as well as 3 of my 4 children have it as well I have never meet anyone ells with it besides my family I'm so glad to have seen this video thank you

@larryvanweelden8426

7 жыл бұрын

tinycelticgirl

I would like to start off by saying thank you for sharing this video I all too well how that feels. I have both NF1 and nf2 neurofibromatosis. When I was in Middle School and High School I would have teachers and students alike call me elephant man or Elephant Boy because of the way I look. As a grown man I still get backward glances from people and here the snide little remarks. It's just their own ignorance and stupidity and fear that makes them act that way. They have no idea what kind of physical and emotional pain we go through on a day-to-day basis without having to hear or see that. We want folks to look at it like we're sorry to exhibit not just exacerbates our situation and makes it even harder for us.

@Crissa42082

9 ай бұрын

This is how it was explained to my mom in the 80s elephant man disease

I have NF type 1 It’s more of a mild case when it comes to he tumors. That’s horrible what those people did. Stay strong man.

I have NF as well and I have minor bumps on my arm. I work in a Dr.'s office and I had a pt who saw the bumps on my arm. he actually asked my Dr. if my bumps are contagious and if he is going to get what I have. I hate ignorant people!

I have nf1 and I've been bullied because of it since elementary school My dream is to become an author and write books because reading and writing always made me feel better after someone made fun of me I wish this man and everyone else the very best

@Shadmannnn

Жыл бұрын

I wish you luck in your journey

@schelleluzius6527

Жыл бұрын

@@Shadmannnn thank you!

I have NF1 and this pissed me off

@lilly9513

5 жыл бұрын

Terrell Scott I know same here

@Shadmannnn

Жыл бұрын

Me to

I walk proudly when people make fun of me because of the spots on my arms because they are just jealous of my arms imprinted with a galaxy

I Have NF. People Used To Make Fun Of Me In Elementary And Middle School. They Called Me 101 Dalmatians And Pepperoni Face. It Still Effects Me Because Sometimes I Don't Think I'm "Pretty" Enough. My Biggest Birthmark Is On My Shoulder,It Makes Me Insecure. My Mom Also Has NF It's More Severe Than Mine Is. 😔 She Has Scoliosis And Many Bumps. She Says It Doesn't Bother Her

It kinda rude to ask what people have... God bless him he seems really sweet.

@janetarmor8957

4 жыл бұрын

Thank you for beening sweet cos I too have nf1

I have nf1 I'm in a wheelchair we are in it together fuck what ppl say I love this story

I have had the spots ever since I was born but have just recently started to develop small tumors on my arms. My mother and grandmother both have the condition.

are there support groups I can go to. I have Nf1 as well it feels good when you realize that you are not alone. I live in Michigan and club to it would help. especially kids I am a adult we need group to go to any information

@lbn1188

6 жыл бұрын

Sally sue Sally sue Nfmichigan.org

My Son Has This Condition. Thursday he had 40 tumors removed

@beatmastert

5 жыл бұрын

where did he get this done, my wife has NF1

I have this condition. I admire your strength dealing with this. I would have lost control and hit someone who was taking pictures of me like that.

I have NF1 as well. God be with you

My brother died of NF. A tumor pressed on his carotid artery and caused an aneurysm

"His mom also has the disorder" That's kind of the point as it is autosomal dominant

I have NF as well and my whole life I’ve been so uncomfortable in my own skin and always get made fun of

I have NF1 as well, and so does my brother and my dad

Disgusting behaviour of these people in the restaurant. I hope they apologised.

@federicomanuelolveira7658

7 ай бұрын

Some people are really cruel.

I have NF 1 I am 27 and it sucks I have brain tumors sometimes life sucks

I tell you something bro, if I I'd witness that teasing, from an NF victim to another, I would have intervened, and stood my ground if needed.

I have nf1 also and this makes me mad I would love to meet this, guy and hug him, and meet the people taking pics to busted there mouths

I have NF as well but my tumors mostly grow inside I have a couple of little ones outside like one on my leg and I used to have a small one on my chin that got removed and I thought I had it tough I can't imagine having to carry a card around and having people stop and take pictures or get up and move and not want to sit next to you I'm definitely thanking my lucky stars the minor only inside for the most part

I have nf and it sucks cuz everywhere I got people make fun of me and im 21 and I still get upset cuz it hurts me

i was diagnosed with this at two in a half i show signs of both 1 and 2 i had ssi when i was a child but now i cant get it i been fighting them im 29 now

I’ve actually met Kevin Jones we have an NF picnic where I live and he comes he comes to all our events we hold as an NF community in my state

your from Michigan can I get the address were this support group is please. wow I would like to join and tell my stories

@lbn1188

6 жыл бұрын

Shannon Demers nfsupport.org

@lbn1188

6 жыл бұрын

Shannon Demers or Fb Nf Michigan

I have NF type one also. I'm lucky to have a mild case

I have nf1 and have lumps in my body on the nerves and I also have got coffee spots and also have a mild learning disability witch came with my nf1

I'm so sorry that you had to experience such ignorant people! I'm not sure I would have been able to keep a cool head about it! I give you a lot of credit! :) Thanks for sharing your story! I also have NF1

@bellabell737

Жыл бұрын

I can't believe people would behave this way.

My mom and I both have NF1, she has neurofibromas on the outside like you, and I have them internally. Many people with NF1 have a combination of internal and external, or just internal or just external.

@Legal.Knievel

8 жыл бұрын

like him*

@charleneowen5984

8 жыл бұрын

my son and I have Nf 1

@kaykay-nc8fj

6 жыл бұрын

Dalai Mami me to

I have the nf 1and my mom does too nobody else in our family has it it's been many times I have went to the store in the cashier would put the money on the counter because they see the Turners on me I do feel insecure about myself because of the NF 1 I know there be some idiot out there would make fun of someone because there different I just wish I could talk to someone that is going threw the same thing I am

He says NF1 is external tumors, and nf2 is internal. I would like to updated that... I have NF1, and you definitely can get internal tumors as well. These tumors can grow on ANY nerve in your body... so surface skin, or subcutaneous... or even in your internal organs. There can be more to it than that too though.

@FinnyThePorg

Жыл бұрын

I have NF1, and I have one tumour. It’s internal

I have N.F type 1, as well as i had MPNST, a cancerous form. Had to wear a big spinal brace after my spinal fusion (had to do it to remove the tumor) and had to use a walker. just get used to people starring at you like your some strange character. But can't hold it against them, i try to put myself in their shoes and I understand their curiosity and weirdness factor.

I have neurofibromatosis as well

I have NF1 luckly i have nothing on my face I got like one visible one on my neck and 2 on my arms. Just got one removed off my leg and i am bored on my bed

I have NF myself and how difficult it is

yeah I have it too I get stared out all the time my esteem is very low

God bless you ❤️❤️❤️❤️

I have NF1 and I lost my left eye to a brain tumor and I was made fun of from kindergarten and through high school . (

Neurofibromatosis type 1 or 2 ?

my daughter Kristen has nf1 she is five years old I'm scared to death about this

@briansefring4981

6 жыл бұрын

My son has this...I feel your pain.

I can relate. I have NF1 I'm in high school, it effects me in my face. and a parent came up to me and said. "Ew what the f*ck is wrong with your face"

@cutiepie5601

9 жыл бұрын

How rude could that person be they should know better! I know how you feel someone told me I looked like a cow and another asked why my stomach was so ugly

@aDOCTORbutWHO

8 жыл бұрын

I have NF1 and it affects me in my face too. I finished high school two years ago and now I'm at University and no of that high school crap goes on anymore.

i just want to see a specialist in it. so i would know more

💔is hurting for lack of knowledge.

I'msorry if I was his family I would have been out of that chair and heads would roll. My nefew has this and if anyone messes with him, they'd has our whole family to deal with, we are all pretty passive but you mess with one of us, you mess with all of us.

i tried to find you but you didnt come up

I have NF1 as well, and there's a deformed bone on my neck

I have neurofibromasis I hate being stared at as well

I have nf1 my sister my dad and aunt and uncle had nf too

Nf1 sufferer too . Covered in birthmarks. Was gound in late 20's

@jt01212

5 жыл бұрын

43 yr old male who suffers from NF1. I also have a body covered in birthmarks. I wish you well, Elle.

I have also suffering from this not feel well

I know how it feels to steared at it have nf as well I also lost my right eye as well when i was 9. I got lurning difficulties I'm in my 20s and people just and don't ask. I'm proud off who I am yes I got health problems etc I can't change who I am but I would not want to ever becoz there people like me and there r people I can help if they need it coz I know what's it like and u should never fell alone.

I have NF it really sucks and it is very painful

Every time I go on holiday take my top off to sun bathing people take photos of the scenery and sly ones of me I've got hundreds all over my body getting then on my face now to I try to not let it bother me but it's getting harder my mental health suffers and it causes insomnia I can't sleep without medication that dont always work I'm on tramadol which is a synthetic opiate have been for 10 years coz of the pain due to tumours in my spine lifesaving pretty grim for me with nf

Sir I also suffering from this

I also have NF you should look in your area for a wonderful support group or walk they are everywhere

I have nf1 and it hurts me that there is mean people who make fun of others with nf are any other genetic disorder. Even if I didn't have nf are any genetic disorder I would not be mean cruel I would stand up for people who look different. I hope the mean cruel people will get there's.

I'm only just mortified by ppl and there attitude toward this !! Ppl and what they did to u was simply becoz they don't know what to say or even respond :: I have nf 2.., this made me sad :(

I have Nf1. it is not fun. I have deformed bones, spine issues, mental issues,

they need to call the Hoxsey clinic

I have NF1 and so does my dad 😱

I also have NF1 and people just stare at me

I have nf type 1 and 2 so do my kids I used to get picked on by everyone

I have nf1 too

I have nf2 I have cafe spots and a few tumors Im 23 and have a new born and she has two cafe spots

I have nf I have Cafe spots I have I tumour I will never have surgery where my tumour is because where my tumour is located help me remember stuff and I if I have surgery I will die. I have a Speech disability.

I feel bad for you but I am living with nf too and it sucks I feel like I am different then the others and I feel like they laugh too but I keep strong and I don't care if I am different and this is how God made me

@rarity2

7 жыл бұрын

Tina ARE you from India..

hey this sucks mane but i have NF II but mine is dormant as far as im told

i have neurofibromatosis too...

I have this

I have NF1.

I have NF 1 and am 25.. I have a plexiform tumor on the left side of my face. People call me Fat Face Freak.

@nejitenfan

10 жыл бұрын

I have NF1 too. Im 21 don't let them get to you i know its hurtful but they are ignorant. my little brother doesn't understand what i have hes 14 he doesnt seem to belive that they are tumors. and due to my nf1 i have issues like adhd lazy eye. im the only one in my family who has this and i don't know anyone else who has this. stay strong dont let words keep you from being happy

@AllysayWhat

9 жыл бұрын

I have a plexiform but on my neck and on my heart I know how it is

@Katmanduxo-co9nl

9 жыл бұрын

I have nf type 2 I was 8 I'm now 23

@khanaedilstatus90

6 жыл бұрын

i also hv nf whch 1 i dnt knw i am from pakistan the lftside ofbmy facr is efected with ths

@MrJamiez

2 жыл бұрын

Hi everyone. I'm you're all dealing with this. I have NF1 few small tumours on my body & Big-ish plexiform on my lower back, which I am having removed soon.

I have nf as well and People call my four head the wall

@janetarmor8957

4 жыл бұрын

They are cruel and nasty people

there is three type of nf.

@lbn1188

6 жыл бұрын

Shannon Needler there are now yes, NF1 nf2, swachmosis?

I also have NF1 32/m Cincinnati ohio area

I have N,F,,1, please tell him that to take a herb called Ashwaganda, it will super help him take is body easy and calm down under stress 🙏, thank you all my BLESSINGS 💕

I have nf too

Tumors can be inside on NF1 like pheocromstoma bad spelling, I know I have NF1 and have both

how can people made fun of me

@DannyGames92

7 жыл бұрын

Christina Gillespie cause people are mean I'm 25 I have NF1 to i have bump on my hand my stomach ,tumor in my back don't think its cancoreous, I get it from my fathers side sometimes they hurt, some times it doesent, I knew what it was like to get made fun of my hole life in school from 3rd grade to 12 grade

@janetarmor8957

4 жыл бұрын

Because they are nasty

i have nf and my body is full of cofee color spots but my father have exactly same sort of spots as that nan have but my father have so many i dont have that spots but cafe le aout spots cofee like. NF causes me glaucoma.

@Treylogan218BR

8 жыл бұрын

+syed taha AHMED yah i got psoriasis it sucks but im sure NF sucks way more cus u cant hide that shit

@syed_taha_ahmed

8 жыл бұрын

Treylogan218BR ya dude but we cant do anything. When i walk with my father many idiots look at his face at that moment i wish that i stop people to curiously looking at him but i cant do anything. Thank God i dont have bumps on my face but spots worried ne alot.

@zsanettedelatorre181

8 жыл бұрын

+syed taha AHMED the ''bumps'' are called fibromas i have nf 1 also

@syed_taha_ahmed

8 жыл бұрын

+Zsanette Delatorre i am very sad about peoples behaviour

@zsanettedelatorre181

8 жыл бұрын

+syed taha AHMED what do u mean?

I know what you're going through

Omg I have nf too and I would have straight up decked those guys what is wrong with them to do that kind of shot *sorry for the language but gosh

i have nf too

People are so judgemental.. They were rude & very ignorant what nf is they dont understand the person who has nf..

Just watched the video, I have to retract my comments relating to this issue. It was obvious they were being rude, and assholes. There is no reason for that at all, my dad has alot more n.fs on his face/neck/head than i do. never have had a problem with this.

i have NF1

@federicomanuelolveira7658

7 ай бұрын

Me too 💚💙

I have nf1 and I got made fun of in life I am 29 year old