There so cute and I know how they fell because I have it. I have it on my leg back and side. It started when I was 7. I had three surgery’s. And I cant run or jump, and I want to be like others people. But I remember why fit in when your born to stand out. And also there was something I loved to do but people stoped me. But I also remembered never ever let someone stop you from doing something you really love to do

This makes me feel so happy for them

Love from Nigeria.. Living with Nf1

Adorable little munchkins.

For a person has NF1 that gave me epilepsy too. I have tumors and Café-au-lait. But I'm not battling it. Sure it can be deadly for some people. But that' is at low percentage of dieing from NF1. its like at 1%. But you will got through MRIs and EEGs to see if your brain is working well. Your neurologist doctor will test you and give you feedback after the results of Either MRIs or EEGs. But with NF1 you just have trouble with reading and writing. Also be giving a IEP to help you

@MustyBastard

4 ай бұрын

Your not right at all. up to 15 percent of people with nf contract MPNST which is fatal. Also life expectancy is 10-15 years less than the general population . Cancers are more common as well. Not to mention suicide. I imagine you are female. I am a man with this condition and I dream of suicide every day - it is hard enough being a normal man in todays society. suicidal ideation in present in like 50 percent of the people who have this condition. I was a cute kid at that age. I am a freak of nature in my 30s.

I have a birth mark just like the one on their belly. I have Nf1

I am 34 and was diagnosed at 18 months with type one. I had about 42 tumors in my head when I was younger. I had a tumor on my eyelid I have one in the kiasim in my left eye. I'm visually impaired because of it. I had a shunt put I'm my head when I was 7 because of fluid on the brain. Other than all that I also have a rarer case then most

@MustyBastard

4 ай бұрын

I had one just show up on my eyelid a few years ago and it is getting bigger. It is on the eyelid of my only good eye, my other eye is messed up from optic pathway glioma. Did you have it removed ? I am worried about loosing vision in my only good eye if it keeps on growing

Awwwwww I hope everything goes successful bless their hearts too cute they are 🤗🤗🤗🤗🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🥰😇😇😇😇🤗

@MustyBastard

4 ай бұрын

I was cute at that age too. Too bad it is a degenerative condition, in my late 30s I am a freak that fears leaving the house. And my bumps aren't even that bad. But people treat you like a monster

I'm 72 I have nf1 you can live a normal life

@MustyBastard

4 ай бұрын

not if you are a man. No man I have ever met with this condition has had a normal life. It is usually the women with this condition that are passing it on and having somewhat normal lifes and families. Most men with this condition die alone. Even girls with NF don't want a guy with NF