I have NF2 - very glad her surgery went so well! I've had four brain tumours and three peripheral nerve tumours removed over the last 7 years. What this video says about NFers (both 1 & 2) is absolutely right; we are strong as hell and just keep marching on.

@seahmeibei3069

2 жыл бұрын

How did you know so much tumor? Is it mri for whole body?

I have NF type 1, the doctor told my family I won’t wouldn’t make it a year, but now I’m 35. Stay strong, Your a walking testimony every day. God has things in store for you, so you can share your story with someone else to give them so hope. God bless

@heystara7318

3 жыл бұрын

hello may I ask why they said you didn’t have a year to live ? Doctors might think I have it

@mobie9336

3 жыл бұрын

That's what my Dad was told when I was born, I never ask in detail, I ask him and get back with you.

@Sushreescreation_607

2 жыл бұрын

@@heystara7318 mam nf can cause cancer, blindness, and paralysis plz tell me

What an incredibly brave young lady. I watched this video and I feel guilty stressing about my issues which are nothing compared to what Hannah has been through. I too had cancer and had a hysterectomy to remove it all. It's been two years and I'm still cancer free. I have other issues, like the inability to stand or walk much, but nothing like what she has going on. Hannah you are so beautiful and have more bravery in your pinky than I do in my whole body (and believe me, I've got a big body). I wish you and your family luck and continued success.

I have NF1 as well. I lost my left leg through the knee when I was 3 yrs old. I wear a prosthesis. I never let it slow me down as a child. Sure I may have had to modify my approach, but I enjoyed all the same activities as my friends.

I have NF 1 and am very grateful to be the 3-5% with no problems

@beccajanebane7788

5 жыл бұрын

Same here only calf spots

@SimsbyMimi

4 жыл бұрын

Me too, I’m very grateful , I have the calf spots all over my body and just a few little bumps on my back and a big one on my shoulder

@Little_Sprite95

4 жыл бұрын

Same here! I'm so grateful I haven't had any problems but I'm really worried about having children. I don't want to risk passing the faulty gene on

@simona_sigmund1001

3 жыл бұрын

@@SimsbyMimi Same here, mark's all over my body, plus I have a big tumour on my shoulder - I just tell people it's a shark bite 🤣 its sorta like my trademark lol

@simona_sigmund1001

3 жыл бұрын

@@Little_Sprite95 The fear is real! I've decided to adopt instead

My little son has NF1. Thank you for sharing your story.

I have NF1 and just found out this lump on my neck causing my left arm to not function good is a cancerous tumour and I’m going to get it treated so wish me luck I hope I feel as happy as you did! 👍🏻

@PapunaOfficial

2 жыл бұрын

did u do it yet

I have nf as w3ll. Its a hard time to deal and live with but i still stay strong.

@thecoolestgingerkid

4 жыл бұрын

Scooby R hope you’re doing good ❤️

@beanj580

4 жыл бұрын

God Bless you and I hope you are doing well today

@angelaunique3626

4 жыл бұрын

Scooby R ❤️

@rishavraj6343

4 жыл бұрын

Scooby R can i get a way to communicate with you as i am also affect by nf2 so i just wanted to discuss you about that just to share pains

@adelynlavigne9441

4 жыл бұрын

I hv. Nf2 n it suck

All the best Hannah! You are a true fighter and an inspiration for so many other people with NF1

I had this exact plexiform on my right brachial plexus, that was pre-cancerous. My right arm was paralysed in 2001 (I was 31)following the surgery to remove my large tumour. 18 months later, it recurred, and I had further surgery. I had been able to shrug my shoulder after the 1st operation, but after the second, any movement I did have, went. I have to wear a sling 24/7, and although the nerves were severed, for some reason, my arm started violently twitching about 5 years ago. It does it constantly and it is very distressing. I've seen several neurologists but they don't know why it does this. I used to be a staff nurse, but nf1 made it impossible to continue. Hannah was very lucky to retain movement in her arm. I wish her lots of love, and hope her nf doesn't progress in the future x

I have nf1 type 1 i feel so lucky I have not many problems

@gusvasquez2320

3 жыл бұрын

Same here

@kerrieayees4677

3 жыл бұрын

@@gusvasquez2320 💚

@gusvasquez2320

3 жыл бұрын

@@kerrieayees4677 You have hangout messages

I’m so happy that she was able to receive the surgery she needed💖

Always loved Hopkins. I am so lucky to live near this hospital. Every doctor I came across with my NF there was amazing, my optic glioma due to NF was amazing and my surgeons and neurologist for my brain surgery incredible. If I have to make one wish though for Hopkins is the food to better come on, haha they are not known for their food but absolutely known for great knowledge, care and loyalty and heart for all patients. I've been there since I was 3 now until almost 40 and thank you for sharing this story.

@mrthud1981

3 жыл бұрын

@KpGaming by the Big Man upstairs and lots of the eaters I did. My thoughts and prayers with your brother and your whole family. He is going to have some trouble with vision but it will seem natural for him. Just as you look at things through your eyes are completely different than others and so on. He will be fine. Just find a great neuro optomilogist to follow him.

I am very hopeful after haven watched this video not only for the successful achievement by the professional medical consultants but for I am also a victim of a NF1with multiple tumors around my body especially on both legs(tights to the knees).I also have the dark brown patches on the upper part of my left arm(almost a circle of 6" diameter)and both sides of my stomach that covered not less than 10"in width and 2/3 of the potions around my stomach skin. The joy is for the good news that successful surgery can be achieved by the professionals(in cord).probably with lesser risks of reoccurrences. It's also delightful to note that this doctor can imagine the seriousness of the pains we do go through.

This is a beautiful story, thank you for sharing Hannah.

My 10 year son has neurofibromatosis type 1 with a plexiform tumor on his back where his spine is we have been monitoring with MRIs yearly and I'm so scared recently he's been telling me it hurts when he walks runs and stands up and I'm just really scared for him I want him to be okay this testimony really helps me with what this beautiful person has gone through she's a survivor a fighter and a thriver ..

You are an inspiration!!!!! I have NF1 and Moya Moya which is very rare for an American Male except with NF1. since birth

I have NF-1, the pain has kept me awake at night but I'm glad that my version of the disease is manageable

@jacobsfirstweedgrow894

4 жыл бұрын

LMAO she died. Poor dead girl☹️

@soldiersgirl9195

2 жыл бұрын

@@jacobsfirstweedgrow894 That is rude to say! My bf has NF and the pain keeps him awake up at night and I stay up with him when I can and we are 5 minutes from each other and when we are together I help him ease the pain the best I can! He made it past the normal life expectancy and he is alive and I am just happy to have my days with him while I can. We keep each other positive and he fights for my autism and seizures and I fight for his NF and the pain that comes with it. We join our battles together! Kev is my world and no matter how bad things get we depend upon each other to get through it!

i'm doing research for a biology paper on neurofibromatosis, and this story is so inspiring! i doubt she would see this but i hope she's doing well :)

@priyankagovekar6220

5 жыл бұрын

I am having plaxiform neurofibroma on my left leg from knee till ankle since birth. if you know anything about this please help me.

@amazingabby25

5 жыл бұрын

Priyanka Govekar what do you want to know, I have close to 15k neurofibromas some are plexiform and some aren’t, I know tons about it, let me know if you have any questions

@minchumahesh.7911

5 жыл бұрын

I have suffering multiple skin neuofibrama pls help me

@hasnahasna9820

5 жыл бұрын

@@minchumahesh.7911 mee too minchu

@lynnbraben76

5 жыл бұрын

@Hannah Korycinskit is the most common genetic condition, yet few have heard of it.

I have nf1. I was told that the tumors I had in my hip and knee were inoperable. 2 years ago I had 2 pounds of a plexiform tumor on my hip removed. So far it has not grown back. 🙏

I have NF1 had three surgeries,going for the fourth one next week

I have had Nf1 since birth I'm now in the 9th grade and I'm 15. A couple week after I turned 14 I went to a minute clinic and she sent me to the emergency room because my right lower admin wasn't as soft as my left.. they did scans and found out I had a tumor.. so they sent me to the Childerns Hospital of Georgia. (like one week after) They looked at the scans and recommended I got it removed as soon as possible since it was on the larger side. so after some scans there on March 6th 2018 I had my surgery to remove the tumor. before my surgery we were told their wasn't. a high chance of it being malignant since most nf tumors are begin. So I want that worried about it.. I knew God would look over me. So yes I needed help getting my strength back in my leg which wasn't easy easy.. but I did. I finished school on homebound because a couple week after the tumour got check to make sure.. and it was a malignant tumor.. so.. since it was malignant on April 16th 2018 I began radiation therapy to get the rest of the tumor that couldn't of been gotten out during surgery without harming my right leg movements. So I had radiation for 5 days a week for 6 weeks. i finished on May 23rd 2018. I'm glad God watched over me during all of it. and I went to a great hospital and am glad I'm ok.

@leget4694

4 жыл бұрын

That is very impressive and shows your physical and mental strength. I hope you’re ok now and I wish you all the best for you further journey.

Thanks for sharing this inspiring story, and thank you Hannah. Let's end NF!

thank you for sharing your brave story

I survived a few malignant peripheral nerve sheath tumor. I’ve never seen a video featuring someone going through something so similar to what I went through. 😭 I got so sick of explaining the complexity of it that I finally started telling people I had circus freak cancer.

@alrightsettledownlittleguy9250

2 жыл бұрын

Same my brother has it as well. I need as much tips I can get

God bless you, Hannah!

I have nf2 and its ok cause atleast they caught it on time

@aaliyahwarriorandthereptil6554

5 жыл бұрын

Liliana Rodriguez omg that’s the super rare one I’m here for you I’m have Nf1 I’m so sorry just keep on going and don’t give up

@rishavraj6343

4 жыл бұрын

Liliana Rodriquez i have nf2 too so basically we share same problem

I have NF1 since birth

I am having plaxiform neurofibroma on my left leg from knee till ankle. if u know anything about this please help me.

I Have NF1 just recently had one surgery to remove one tumor going in for my second surgery on march 6, 2019 to remove the rest of the tumor..

@lynnbraben76

5 жыл бұрын

good luck Joel, hope everything went well

@jeffreyschoenfeld6264

4 жыл бұрын

Hope it went well I have had numerous surgeries. Stay strong

@gimme1ksubssoicansurprisem485

3 жыл бұрын

its been a year it must have recovered well :)

I have NF1 since birth also

@aaliyahwarriorandthereptil6554

5 жыл бұрын

Jerome Cabral same here

This passed July 14th I had an RGNT type tumor removed off of my cerebellum.. I hate having nf

Como fazer o tratamento

What kind of food should I eat for neurofibromas type 2 everyday? Carbohydrate? fat? protein?

Love you Hannah

I have nf for years my family thought it was nf 2 but it’s nf 1 and I’m doing good

just got diagnosed

My son and I was born with NF 1. I get migraine headaches all of the time. I have alot of issues this condition and I hate it!

@cleopatra1311

5 жыл бұрын

Hi Natasha my sister, my husband and son have neurofibromatosis also my brother in law so that helps my son cope because around here he is not different. How are you dealing with it? :-)

@dystopianreverie7638

5 жыл бұрын

My best friend has NF1 and gets lots of headaches and migrains

I have Schwannomatosis which is NF type 3

beautiful

Soy Argentina y tengo neurofibromatosis y uno de mis hijos también

I have nf1 and I cry everyday nobody understands or will ever feel the pain I feel

@venussproductions4541

3 жыл бұрын

I have NF 1 too

@Sushreescreation_607

2 жыл бұрын

@@venussproductions4541 I have nf 1..It made me cry

@venussproductions4541

2 жыл бұрын

@@Sushreescreation_607 I was nervous at first but I know I couldn’t let it get in my way we are all strong

@Sushreescreation_607

2 жыл бұрын

@@venussproductions4541 nf 1 can causes cancer, blindness, paralysis plz tell me

My brother had NF and he had tumors in his brain stem. Surgery wasnt an option. He died when he was 16.

@cleopatra1311

5 жыл бұрын

So sorry! My sister, husband , son, and brother in law all have it.

I can't nderstand that pain bcoz I have the same problem at last found someone like me

Hola Soy argentino y también tengo neurofibromatosis y mis hijos uno de mis hijos también

😭💚 crying

@himanshugautam9059

3 жыл бұрын

I can understand your pain

I have nf the one with the brown spots on my stomach and around my private.

I also have it but idk which number

My dad got cancer from this and he already had it before and he ended up passing away. My brother and I have a higher risk than anyone else of getting cancer. I have a tumor on the back of my head and sometimes I get sharp stabbing pain, I have to keep and eye on it cuz it could become cancer (brain cancer) I believe

I have nf 1

amazing.

Hopkins keeps refusing me to the NF clinic because my parents are dead and my insurance doesn't cover genetic testing, my neurologist has confirmed my diagnosis by way of extremely obvious symptoms, I don't have fine motor skills anymore, Hopkins please reconsider your protocols, your adults with NF didn't all have healthcare when they were children.

I have NF 1 if it gets worse I’m yeetingmy self 😂

@MrJamiez

2 жыл бұрын

I feel the same sometimes. I have NF1 & when I were younger like a few years old, I had water on the brain something like hydrocephalus & I had to have a shunt in my head brain. I've still got dent in my head from the op.

@Shadmannnn

Жыл бұрын

death by burning

My wife had NF. Because of this she died Cancer at age 30.

I too have NF all over my body.

I am also suffering with nurofibroma

@tjj6362

2 жыл бұрын

🙏

i have nf1 :(

i have neurofibromatosis help me to get the dermatologist

@kemalesirinova9646

6 жыл бұрын

Mkhacani Christopher Maluleke i have too

@natashacobbett9737

5 жыл бұрын

So do I.

I have nf1 genetic disorder please help

@priyankagovekar6220

5 жыл бұрын

I too have if you know anything about this please help me.

@robpinchbeck

5 жыл бұрын

I have nf1

@pravinvalvi6588

5 жыл бұрын

rob pinchbeck

@amazingabby25

5 жыл бұрын

What you like to know. I know a lot I have a very severe case. But also know a ton about the disease, and had read every single recent medical study regarding it. The groups on FB are good for support, buts it’s a lot of crowd sourced information, which is good but very rarely do you get a medicine backed answer.

@sadilakiraknas8940

5 жыл бұрын

Pls yennakum help pannuga

I have this

My son has

I have NF1 and force myself everyday to live normalized as possible. But chances of living life as those without it is an impossibility. Getting females to interact with me during my twenties to mid forties is when it all begun to come crashing down. Employers don't want to be bothered. At fifty years old chances of enjoying life to the fullest is not reality. Yet I keep rowing the boat because the ignorant could care less if it capsized or not. Please, NF people. I know its hard but do not allow for society to cause you feelings of inadequacy. Live. Live. Live.

I need doctor

@JohnsHopkinsMedicine

Жыл бұрын

Hi, If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.

Hello everyone, my name is Martco, I am suffering from NF1 and I opened a channel where I talk about the problems that neurofibromatos can bring

I problem Neurofibroma plz help

@amazingabby25

5 жыл бұрын

nilesh paliwal what would you like to know, I have nf1i have one of the most serious cases. I can answer anything.

@newcastlewest8397

5 жыл бұрын

+amazingabby25 i have to but not sure which type

@amazingabby25

5 жыл бұрын

Ethan Barry Do you have tumors? And birth marks?

@MartyParty2809

5 жыл бұрын

amazingabby25 I have lots of lumps and lots of birth marks my doctor said it’s called von recklinghausen disease and nf but I am not sure what type maybe you know

@iselltamales8317

5 жыл бұрын

Ethan barry same here

Neurofibromatosis এই রোগের চিকিৎসা কোন জাইগা দোয়া করে কমেটে জানা বেন

@NEUROFIBROMITOSISguruji

6 ай бұрын

No

I have von recklinghausen disease I got the lumbs and birth marks anyone else have that

@mrthud1981

5 жыл бұрын

I do. I have multiple fibrobromas on my right arm, a few on my left wrist, one on my forehead, some on my stomach, a large one on my tongue, one on my right optic nerve tract in my brain which sits in front of my pituitary gland and it was malignant when I was younger, I have 3 cafe au lait spots (birthmarks). The tumor on the optic nerve tract eventually caused me to have Epilepsy when I was in my early 20s. I also have Lisch nodules on the iris of my eyes.

@lynnbraben76

5 жыл бұрын

yHi Marty. Hate to correct you, but nf1 isn't actually Von Recklinghausen. That is a common misconception that even doctors make. But I am a pedant!! Anyway, the lumps and birthmarks (café au lait spots) you mention are typical of nf1. They can grown on the skin, or in the body, and can vary in size dramaticallSome people will only have a small number of tumours, while others will have a much more severe case. I hope you only have a few, and it stays that way.

@MartyParty2809

5 жыл бұрын

Brandon B I have lots to

@MartyParty2809

5 жыл бұрын

Lynn Braben I have lots

@PhantomHaas

4 жыл бұрын

@@lynnbraben76 What do you mean, Von Recklinhausen first described the disease and it was later changed to NF1 after we knew the pathophysiology of the disease. Von recklinghausen and NF1 ARE the same disease.

hi I'm 24 an I have NF

Is there anyone in India

I have nf1😜

I was born with NF type one it’s scary for anyone who has it .

All these medical procedures should be cost-free. People don't choose NF.

I dont even have the money to get myself treated from this devil and one day i'll be earn enough money and get myself treated and one day will definately come when i'll get rid of my all pains, agony and suffering that have to go through in this life.

,,i havr on onr

NFT

wash they neck