Відео

End nf

I have nf2

Hi

Is there anything I can do with my eyes or this problem stay long time ?

I just recovering from plastic anemia I have a question 1 I am having problem seeing my eyes not that well as before

she was my cousin, she passed away a few months later. miss you so much honey

love there from denmark from someone who has nf1 himself end nf

Poor thing..coming on medical research come up with a cure soon.

He died or wot?

Hi Autumn I'm Amanda and I have NF1 Two I know how it feels

Essa doença é muito difícil conviver com ela 😔 meu filho só conseguiu viver até os 23 anos pois aos 20 foi cada vez aumentando os tumores e comprometendo as articulações até que perdeu os movimentos ,a voz,e então não resistiu em 2020 muito sofrimento.

She is brave

I have NF1 myself I died three times when I was little Im 26 years old I wasn't supposed to live the doctor said when I turn 18 I was going to die but I prove them wrong the Lord is great he can heal us all God bless everyone who has it and who dont sorry if my writing is not that good I have mild learning disabilities as well I'm not ashamed of that either.

🙏

Continuing to keep Terran in prayer, she is such a Sweetheart!

Had a wonderful time with some of the best people in medicine and science.!

I wish I had a place for my son to go to when he was little and or even now. He's 23 now, but it runs in our family so he really doesn't feel out of place. Aunt's uncle's and cousins have it. So far he hasn't been teased. My sister has it, she always came home with bruised knuckles from fighting LOL. She's the sweetest person one could ever meet , but she didn't take no crap when she was growing up. She saved my life when I was being murdered by a 24 year old drunk man. She was 15 and I was 11. She's one in a billion. I love her so! I love them all!!! OF COURSE ❣️💓😍, And you guys too! Stay Safe.

I really liked the video, good job! Noah is such a beautiful young lady. In fact, my brother, who is younger than her, also has abetalipoproteinemia. I pray for both of them to grow up well and happy.

I am having same condition as her but mine with addition as i am not having proper treatment n i am not able fr higher treatment as there is lockdown in our country n everyone is afraid of this pandemic..n i pray fr her family n friends...

I’m Maddie I’ve pleixform NF1 too

I’m Autumn and I have NF1 too

My daughter is 18 months old and she just got diagnosed with the same condition I'm new to this I been watching videos and reading up on it since I got the news

hello, what would be the exam to close the diagnosis? I'm in Brazil, my son is 7 months old and since 9 days he has skin lesions that the biopsy indicates neutrophilic dermatosis, and for two months he has a daily fever, anemia, low hemoglobin, and is underweight and ideal size. It improves with corticosteroid use but gets worse when you take it off. Doctors gave the hypothesis of Sweet's syndrome but did not close this diagnosis.

How r u today jordan ..plz replay

God bless u king

Do you have a website or FB page Green family, we would love to connect with you. I have jsut started an FB page: XLA: Caring for our Kids to support parents and to find like families to support one another

I would love to connect with the Green family. My three sons were recently diagnosed with XLA, they are 12, 7 and 5

This is the coolest video ever!

yeah, I'm the kid in the video, hi everyone!

My prayers are with him

did she get a match?? Yay she got one.