Відео

Cómo me restro

RIP my son nf1 cancer. 1986 2018😢

Love to all with nf have nf1 to from Denmark

Thank you for this video. We WILL end NF1. God bless all that care for those struggling with this disease

Endnf love from denmark have nf1 to

Does taking prenatal vitamins make your NF1 worse

My self akash @india and my brother have nf1 pls help

My 8 year old Great Nephew Maverick Cano has NF1 💙💚

I was diagnosed with NF1 in 1988 and in September 2023 I lost a kidney due to NF a 10cm tumor was on it and I had no clue was there then 6 weeks later another surgery to get a walnut size tumor off my pancreas then in February I had radiation because of a tumor on my vertebrae. I finally see a NF doctor in November

Eddie is so great and i just love him and how he supports this foundation!

I also have NF1

Me da miedo leer los comentarios y las secuelas de cada uno, yo lo herede de mi padre que murió hace 3 años con 67 años. Lo siento por no hablar más, tengo mucho miedo, solo sueño con que la medicina avance y nos pueda ayudar. Tengo videos de mis operaciones y tratamientos en mi canal. Un fuerte abrazo a todos. Ánimo campeones y campeonas❤

❤❤❤

Love from denmark have nf1 to

Go Holly We all need to see you

First of all is not a disease it’s a disorder. I have it and I don’t like the phrase disease.

I hate my family dr Don.t bleave me l am in pain with nf1

한국에서도 신청가능한가요?

Hope to share more news about nfx-179

🫶

Does medicaid cover? How do I ask my doctor? They still need to do a brain scan in 6 months but want to see if I can try something in meantime I'm sick of waiting to be seen :(

9.10 am thanks Kate my grandson is now going on a pill form. He had chemo he now 13

I don't read any comments here. How sad! Is there no hope of treatment or recovery?

Yo tengo una hija no habla le afecto la parte ↗️

I too suffer from nf2 to be honest I hate living with nf2 I'm covered from head to toe with lumps

I'm the only one in my family with NF

Quiero mas información sobre este video sii

Can I apply from Italy too?

Hello kate my name is ken myke l read on a wed sight there is meds for nf1 and nf2 so l am wondering about the meds what does the meds do and how can l prove l am in pain do to nf1 and nf2

I've seen and read tons of information about the areas that we tend to have weakness in and struggle with but has there been any research or data showing what areas that those with NF1 tend to excel and be good at??

That’s why baseball cap don’t fit me 😞

Dear I also suffering from Neurofibromatosis not feel better my self

Hi maam i am also suffering from Neurofibromatosis iam not feel weel feel bad not comfortable my self

Hi, I was diagnosed in 2012 with segmental NF. I've been trying to find a clinical trial in Northern California to participate in. Hoping to help someone learn more about the lesser known NF.

I was a participant in the NFX-179 study.

I was a pretty outgoing kid, but after years of bullying, social exclusion and torment, I became socially awkward as a result . After so many bad social experiences, I just started to assume that every social experience would be a negative one and for the most part they were. As a kid, I was always bullied more for my optic glioma than I was my NF. It wasn't till I was 30 that the bumps started all over my face and now my quality of life is worse than ever. I don't like to think that I have mental health issues, I just have challenges with the way people treat me. No matter how many pills I pop, this will never change that, that is why I have always stayed away from pills. I think when it comes to diagnosing kids with autism who have NF, this should be considered.

People struggle with my appearance and I struggle as a result of having so many negative social experiences. Calls this autism, but what it really is, is PTSD. When I was a little kid I was out going, but was told to shut up and was outcast so often that I lost that quality.

:( im a spontaneous mutation, the only one in my family with it.. sad and scared.

great love to all of us with neurofibromatosis from Denmark who also have nf1

great love to all of us with neurofibromatosis from Denmark who also have nf1

How can I reach out to you my 5 month old has it

My three words 1. Burdensome 2. Frustrating 3. Lonely

My daughter as of now has had 2 craniotomies. The deficiencies has been affecting her balance. Thank you for your dedication.

This was very good to learn about the genes involved with NF1 . Knowledge helps to relate to the unknown a bit better. Thanks

i was wondering if you invite people with the more visual kind of NF1 or NF2 because i only seen that one dude up here on the show. The only reason i ask is because i have NF1 and mine is more visual not as bad as others, but we all go through rough times dealing with this but dating is a big issue more so for people with NF that is more Visual what is your thought on this, because people like at people with NF that is visual like they are disgusting looking so i was just wondering.

I have NF 1. Thank you for this information.

My granddaughter has nf1

im a 50 year male i suffer with chronic pain from nF1 i have had fibro removed from the out side hoewever i dont have that man that are ver noticeable outside but if you look closely you can see, but i have then inside and i suffer chronic pain 24/7 shoulders, hands, fingers, feet legs back, and going to start seeing a pain managment very soon .im from Savannah Ga and the DR ARE FROM STRICT on pain medication and the only thing that slightly helps are hydrocodone and oxycodone and that dont really kill the pain.

Since I have NF1, I have been witnessed and been a part of these changes over the past 45 years. When I was a child, the doctors told my parents I would not live to see the age of 16 but here I am, 49 in college (working on my Social Workers degree) and married to an amazing woman.