Neurofibromatosis Types 1 and 2

[@shelleyporter6204]

I Have This Sice Early Chill Have Really Bad Ch a l l ens&,a Hard Attacks in December Can't Wait Challenges & Epilepsy-& Poor Eye Sight See Dr's E ery Year For my Epilepsy & My Meualogist I also Have Scolis Since Child Heart Attacks in December Challenges s Scolis Heart Attacks In December Can't Walk But I Will Be With Therapy Soon & Shakey Hands & Have issues with my eye & Neurofibromatosis NF Neurofibromatosis 2 Jave had Challenges All My Life Held Back in Kinegarten Because The Teacher was Think that I didn't learn as fast as other Failing any Calles Nnith Grad emr class & I faild many classes. & It's important to Have Some One when I have Seziures I Don't have When They Happen?When I Have these have Heart Attacks Could Go Blind Look Up aNf one && 2 & You Know I Have Issues .

[@MuhammadAli-ml9bt]

THANK YOU VERY MUCH VERY NICE THANKS FOR SHARING

[@wissamalsudani]

Perfect

[@muslimlafrance1360]

Combien de pas compris est-ce que vous avez un moment pour ça

[@itsallgood2]

I've been living with an undiagnosed issue for over 15 years. How much does it cost to be tested for nf1 and nf2?

[@TheOneZenith]

little_ruby - Official Any geneticist can diagnose either NF1 or NF2 with a gene test. NF1 can be diagnosed just by counting café-au-lait spots(at least 6) and especially if you have a parent with the diagnosis already. Depending on insurance and where you go for your diagnosis would determine cost.

[@amandanewcomb6628]

Insurance should cover it is a special genetics test

[@أممنصف-د2ع]

@@TheOneZenith Je suis d'Algérie. Mon fils de 15 ans souffre de la même maladie. Il l'a frappé à l'œil. Il est fermé et ne les voit pas. Chaque fois que je le regarde, ça fait mal. N'y a-t-il pas un remède ?

[@TeeGlass]

Thanks for taking the time to do this. Thanks for caring.

[@amandanewcomb6628]

In Oregon very hard to find a Dr. with the knowledge of what how and why They have no idea how to treat it is often brushed off Slimming of hope that relief is coming without Surgery

[@Preppergirl10]

Same here with GA. It is why my bf is scared of death of doctors now. I worry about him

[@andrewtungate9086]

Very helpful! I have NF2 and I understand it better now. Thank you

[@step_zero]

happy this helped

[@DjCp3o420]

Same

[@nourrashid5012]

Very helpful and clear! Thanks :)

[@kasuntharakasamarakoon7193]

Pronounce like Ha Mar toma,,,not Hi Mar toma...to reduce confusion

[@BlackDotCath]

I have a question, i dont seem to find an answer anywhere. do the acoustic neuroma occur on both sides at the same time? Or can one appear and then the other 5 years later? It's for nf2 Greetings

[@herlynmaetrinidadbaluyut743]

Pwd bang ikamatay ang neurofibromatosis type 1

[@dharavathsaida391]

I have type 1

[@ishousi341]

Bonjour moi meme je soufre de neurofibromatose depuis la naissance heredite de ma mer tout mon corp est recouvert mais je vit avec a 66 ans je l ignore je vit et elle fait partie de moi totalmnt et . Il ne faut pas se regarde exsterieureman mais interieurement courage Isho

[@mohamedmokdad2899]

Mon neveu souffre de cette maladie on vient de le découvrir l'oeil gauche endommagé il ne voit plus l'oeil droite il voit mais il existe des nodules on s'est as encore est ce qu'elle est opérable svp répondez moi

[@kathycourter]

I believe i my son and daughter have NF1

[@srinivasaramanujan2881]

Wywołali straszne torsje,musiałem aż przyklęknąć w sklepie .ONI przekazują że skończyli już rozmowy z ludźmi poprzez ciebię.Resztę przekażą osobiście tam gdzie byli zaproszeni jako goście i tam gdzie się pojawiają nie pytani o zgodę.ONI przekazują że jakakolwiek próba oszpecenia ciebie będzie kosztować osoby które były w to zamieszane tym iż odchodząc pozostawią tym osobom nerwiakowłókniakowatość .Obiecali ludziom iż żaden człowiek nie zginie to wszystko .Potrafią wpływać na ludzi na poziomie komórkowym,genetycznym o czym wiecie .To wszystko dotyczy także ludzi którzy dopiero co dołączyli do zbrodni .Uzdrowili matkę ("Mengele " z USA) z choroby Alzheimera ,zaś jej proces odzyskania osobowości zakończą przed swoim odejściem .

[@atem2302]

your presentation could serve as a good model for how to present things on youtube

[@step_zero]

Appreciate it :)

[@mariiak3137]

Thank you ! This video helped me a lot !!!

[@khaledsaleh2468]

great video

[@hskIuvbot]

I have type 1

[@juliuslee2630]

I have type 1 too

[@Sushreescreation_607]

@@juliuslee2630 nf 1 can causes cancer, blindness and paralysis plz tell me mam

[@duddudevaraj859]

Treatment untundha

[@pouvoirdelamour8052]

Thank you. This was very helpful

[@feisalalrubaei9157]

thank u soooo much , it was helpful !

[@step_zero]

glad i was able to help :)

[@Coldnfallen]

I wish there was more information regarding NF help for adults. As a child, I had the best care with Dr. Carrey from SLC. As an adult, I can't find help. Especially for a mosaic version of NF1...

[@anisulakonjee761]

Thanks a lot ... it is genetic.. what is the diagnosis and treatment of this..? Any medicin?

[@step_zero]

this is an introductory video, I can make a more in depth one with diagnosis and treatment if viewers request it.

[@TheOneZenith]

To my knowledge, there is no treatment or medicine. It is a progressive degenerative genetic disease. If you’re unlucky enough to have it, all you can do is manage symptoms.

[@TeeGlass]

What if asolutely positively have NF2 but I also have the spots as well??

[@simona_sigmund1001]

My friend has NF2 and I have NF1 but we both have the same spots - that's normal :)

[@tal8871]

amazing, thank you! 6 minutes and super clear :)

[@sanamohamedali5353]

Thanks

[@tinkageorgewilliam871]

Thanks

[@sarahc.1998]

Thank you! It was really helpful🌹🌺

[@step_zero]

So happy I was able to help.

[@labedbellasher4644]

Well done

[@martadoran2186]

R

[@abossomss496]

Thanks ❤❤

[@michaelgarcia4402]

Are pigmentoma iris hamartomas are the same as floaters ?

[@Sushreescreation_607]

Sir plz boliye Na nf1 can causes cancer???

[@Greanestbean]

Thanks for the video!

[@alicesummers5288]

Thank you so much!

[@prashant9956]

Super helpful!

[@DjCp3o420]

I got nf1

[@aimanadil1317]

Great

[@prativapradhan316]

Which neurofibromatosis also involve the upper or lower limb bones

[@Sushreescreation_607]

Both

[@sarbdeol2497]

I have type 1

[@ricopatah7791]

Thank u so much.

[@step_zero]

its what i'm here for

[@ursulalestage1503]

I live with this thank it give much more help

[@step_zero]

staying well informed is very important. I wish you all the best.

[@أممنصف-د2ع]

I am from Algeria. My 15-year-old son suffers from the same disease. He hit him in the eye. It is closed and does not see them. Every time I look at it, it hurts. Isn't there a cure?

[@step_zero]

unfortunately there is no cure only therapies to help like surgeries and drugs targeting the mTOR pathway (e.g., sirolimus) to reduce tumor growth

[@muslimlafrance1360]

خاتي حمدلله الله علة كول حل حات إناء مريذ وا خوتي كدلك حمدلله عل كولاشي لأ ثقنتي من رحمة الله