Eu tenho manchas de café com leite. E tenho nódulos no meu corpo, tirei alguns nódulos maiores eu sofro muito, eu tenho um neto ele tem mais de 68 manchas de café com leite no corpo. Ele tem 10 anos, não sabe ler, não escreve seu nome direito, e ele foi pra 6 seria e não sabe nem escrever. É muito sofrimento, ainda os nódulos ainda saiu, sua tem que fazer uma cirurgia ela tá com módulo na coluna. Eu choro muito de tristeza. Se tivesse cura seria bom mais não tem. Eu penso muito no meu neto preocupada dos modelos sair nele ele tem muita manchas
Hello. I have Nf1. I am 53. I've had many tumors removed in my lifetime. I have had issues with my hearing since 2018. I hear static and buzzing at the same time. Sounds are getting louder and louder every year it seems. Does hearing loss come with Nf1? I've been to ear doctors and was told get hearing aids. I have been searching for the right treatment if there is one.
I'm living in south African and i been to doctors but they will tell no cure and im living with that strings one year. Wishing that doctors can get solutions to help.
Good job Dr Lee
You forgot Lisch nodules tho
I NEED YOUR CONTACT DR
I have Nf1. Low key sucks, but I suppose it could be worse. At least I’m not a ginger.
I have NF2 and came here to learn a bit about it, you seem like a good teacher but you lost me at shwanomas
Ur awesome Dr lee
May I know if there is any medicine being tried in the world to control or cure this disease? Can I hope for a cure?
I think there is a medicine called koselugo.
how to cure.
There is no cure for it
I have nf1 it suck ass I am all way in pain
I have nf1 too haven't really experienced much pain from it yet.
@@Jared233had u consider in homeopathy
please help my son have this kind of nf1
Eu tenho manchas de café com leite. E tenho nódulos no meu corpo, tirei alguns nódulos maiores eu sofro muito, eu tenho um neto ele tem mais de 68 manchas de café com leite no corpo. Ele tem 10 anos, não sabe ler, não escreve seu nome direito, e ele foi pra 6 seria e não sabe nem escrever. É muito sofrimento, ainda os nódulos ainda saiu, sua tem que fazer uma cirurgia ela tá com módulo na coluna. Eu choro muito de tristeza. Se tivesse cura seria bom mais não tem. Eu penso muito no meu neto preocupada dos modelos sair nele ele tem muita manchas
E a mãe do Lucas meu neto que vai fazer a cirurgia na coluna 👆
Are your children affected or only your grandson infected with this disease?
Thank you
Hello. I have Nf1. I am 53. I've had many tumors removed in my lifetime. I have had issues with my hearing since 2018. I hear static and buzzing at the same time. Sounds are getting louder and louder every year it seems. Does hearing loss come with Nf1? I've been to ear doctors and was told get hearing aids. I have been searching for the right treatment if there is one.
I'm living in south African and i been to doctors but they will tell no cure and im living with that strings one year. Wishing that doctors can get solutions to help.
Hi. I am sorry to hear that. Yes, so far, no cure.
At what age you tumors to start appear
@user-yz9ry4mp2e I believe around age 4. Do you have NF?
Have you completely lost your hearing or do you have decreased hearing?
I have neurofibromatosis type 1 learning difficulties and language difficulties
That’s it? My son Has this he’s 3 just delayed speech