Відео

Hello! Amazing seminar. Where can I find those conversation cards?

Hoe verliep de behandeling?

Unfortunately, there currently isn't a cure for NF1. May I know when will cure available

Hello maam sir iam Ram Naresh Jha from india

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?

Thank you for sharing this. Dankeschoen, mein Deutsch ist nicht so gut, my daughter is 8 Mos and she has the Cafe au lait spots and she has NF Type 1. I’ve been going down a rabbit hole with thoughts and fears; googling information and just praying that I can help her and provide her as a parent. I just came across your video and it made me smile, and your interpretation of the experience, I truly appreciate you for sharing. 🙏🏿.

لو سمحت خلقت بنتي في وزن طبيعي بس كل ما عم تكبر بتطول بس وزنها يزيد قليل كتير هلأ عمرها تسع سنوات وزنها 19 كيلو كان عندها بقع خمسه بس هلأ صارو شي عشرين وفي منهم كبار شوي على الفخذ والظهر اكتر من واحد سنتيمتر عصبيه جدا بحس أنه عظمها رفيع ونسبة العضل ضعيفه كان عندها شوي التواء في عمود الفقري هي وصغيره الآن لا يوجد التواء ولكن يوجد كتف أعلى من كتف شئ بسيط الطول على المعدل وعند ابني الكبير عنده ست بقع لكن كل ما عم يكبر عم يختفو ولكن يوجد بقعه داخل الفخذ وبجانبها بقعه اصغر ولونها اغمق وشاميه وعنده شاميه تحت الأبط واحده عمره 11عاما ذكي جدا في المدرسه عكس اخته عندها بطئ في الاستيعاب ولكن مع المعلمه أصبحت افضل ارجو الرد عملت فحص عيون للفتاة قالو لا يوجد شئ على العيون ولكن يجب المراجعه بعد ستت اشهر وشكرا على الفيديو والشرح وايضا ظهر على الكوع عند ابني الصبي مثل الثالوله في عمر السبع سنوات ولكن الآن بدأت في الأختفاء

αν ηταν ευκολο μια μεταγλωτιση θα το ηθελα

θα το ηθελα να ειχαν κανει και μια μεταγλοτιση ,

My Nurofriboma problem any titmant please sir

My Nurofriboma problem any titmant please mam madicine name plase

Mam my Nurofriboma problem any titmant please mam madicine name plase )

Wonderful video and wonderful people 😍

❤

Sir I am suffering neurofibroma problem plzz sir any medicine name ...😔

I pray to God people who have this condition get the help they need.

Good health to you.

You are a very strong and beautiful woman! I have never heard of this condition before now; I am intrigued to learn more about it. I’m sorry that the other students in your school were mean to you. I like how you said the the brown spots are a part of you and that you like them! Keep staying strong and keep being you!! Much love from the US.

Thank you for your work. Life is not easy living with this. I know first hand

I am taking Koselugo under adult trial program. I hope for good outcome so many of us with NF cane get some sort of relief

My neurofriboma problem please aney titment

Hi! I have a suggestion to liquefy neurofibromatosis lumps. Keep eating papaya fruit everyday, don't stop . Papaya liquefies cancer cells or tumors that is why it is used as meat tenderizer. Cancer cells /tumors don't have mechanism for repair or heal, it is just uncontrolled growth. Papaya don't affect healthy cells. My teacher had 3 breast lumps and they disappeared because she ate papaya for 3 months, she told us in class. If you don't believe me, google papaya cure cancer. I know its not cancer but it is tumor so is uncontrolled growth. They just might liquefy the lumps so they'll disappear. I hope you try, you have nothing to lose , just all the lumps. My goal is to spread this advice to as many people with neurofibromatosis as i can because it saddens me to look at them.

Mi Nurofriboma problem please madicin name. Mam

Mi Neurofiboma problam sir ani madicin.. Please madicin name

Самое лучшее лекарство- это здоровый образ жизни и вера в Бога!

I have NF1, after I start having epilepsy, narcolepsy with cataplexy.. I would like to know if has some relation because of hipocretin fault

My Newrofribama problem. Any titmant please help me

My Newrofribama problem titmant please help me please help

My Newrofribama problem, tetmant please help me please sir

СЫН СВОЕГО ОТЦА? НЕ ВЕРИМ!

Can I have covid vaccine if I have neurofibromatosis?

I have NF1 and I had the coronavirus in January. I had symptoms, but I had it mild and made a full recovery.

No entiendo porque no habla español podría llegar a más gente que tiene hijos en su misma condición .. al fin y al cabo solo lo traducen en inglés y las personas de habla hispana que es el segundo idioma del mundo ??

Autoimmune, Celiac disease, osteoporosis, kidney problem, Fibromyalgia

Una abraçada súper gran pel Max i tota la família, sou uns grans guerrers i el Max el lluitador més fort i valent, petonets🌹😘😘😘

Hola Adrian !! Me encanto tu vídeo !! Nuestra hija siena de 11 años tiene NF1 , saludos desde Mallorca

Ánimos !! Serás una gran actriz !!! Saludos desde España

Danke für deinen Mut über dein Leben mit NF zu sprechen. Da ist ein wichtiger Schritt um das Thema zu enttabuisieren und Verständnis und Akzeptanz in der Gesellschaft zu erreichen.

Thank you for sharing your story. Very inspiring. I hope that people who watch this video will show their support. All the best.

What a strong, positive thinking, brave young man. You make the world a better place already

I have NF1 and I had covid-19. I was completely A-symptomatic

I have n,f and taking ASHWAGANDA ( WITHANIA SOMNITERA THAT HAS SENSORIL- KSM,66 ), HELPS ME 100%, GOOD NO GREAT

Можно ли надеяться на то , что нейрофиброматоз скоро будет излечимой болезнью ?