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?
@icon7p397Ай бұрын
I think there is a medicine called koselugo.
@slimjimsky5553 ай бұрын
I have NF2 and came here to learn a bit about it, you seem like a good teacher but you lost me at shwanomas
@Anna_M707 ай бұрын
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.
@Young_bozza5 ай бұрын
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.
@Anna_M705 ай бұрын
Hi. I am sorry to hear that. Yes, so far, no cure.
@user-yz9ry4mp2e4 ай бұрын
At what age you tumors to start appear
@Anna_M704 ай бұрын
@user-yz9ry4mp2e I believe around age 4. Do you have NF?
@Rahma-km1qh10 күн бұрын
Have you completely lost your hearing or do you have decreased hearing?
@ynnearguelles9081 Жыл бұрын
please help my son have this kind of nf1
@takeingforever3 ай бұрын
I have Nf1. Low key sucks, but I suppose it could be worse. At least I’m not a ginger.
@katiamaria7589 Жыл бұрын
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
@katiamaria7589 Жыл бұрын
E a mãe do Lucas meu neto que vai fazer a cirurgia na coluna 👆
@areejjojo5062 Жыл бұрын
Are your children affected or only your grandson infected with this disease?
@bezaashenefi8888 Жыл бұрын
I have neurofibromatosis type 1 learning difficulties and language difficulties
@Domobury11 ай бұрын
That’s it? My son Has this he’s 3 just delayed speech
@ynnearguelles9081 Жыл бұрын
how to cure.
@Jared233 Жыл бұрын
There is no cure for it
@Weed413 Жыл бұрын
I have nf1 it suck ass I am all way in pain
@Jared233 Жыл бұрын
I have nf1 too haven't really experienced much pain from it yet.