Hi David my doughter has nf1 and doctor examined her with MR of brain today. So me and wife very sad. Because the stains are in vein of brain. So we have too much sadly.. I want u ask; do u have stains in your brain ? Do you have stains on your body what name is cafe au lait ? I m curiousing what is waiting to my doughter in future ?.. :( so I read your comment and want write here, so hope answer me ..
Same some people can lose their hearing but I have it and have no bumps or tumors (only in my brain right in the middle of my eyes were it connects to my brain)
My brother had this too. When my mother gave birth to him we notice that he has a lot of brown birthmarks in his whole body (like he is a dalmatian) so that was first symptoms then he has learning difficulties. And he was also diagnosed with severe Levoscoliosis which make him unable to sit for a long time. Sleeping is also difficult because he has to change position every 2-3hours. Operating his spine might took his life so we decided that we have to just let him enjoy his life. I just hope to those sufferers that, your family loves you and they will be there for you always. Im praying for you guys.
I didn't know that I had nuerofibromatosis type1 until I was pregnant with my 1st born son. I have had severe medical problems that there's no cure for any of my disorders. Nuerofibromatosis type1 has caused me too many medical problems. My DNA doesn't respond to majority of most medications. I also have had pulmonary problems, liver problems, incurable and intractable pain. Anxiety attacks, severe uncontrable twitching and tremors and seizures due to nuerofibromatosis type1 I'm 61 and they still continue to grow. Had 1 tumor removed from my bottom side and it think if grew back.
I have severe memory loss and learning disabilities as well. Tiny tumors in my mouth. Had hip replacement year's ago and I have not been able to walk ever since.
I have nf1. And recently got diagnose with a brain tumor. But it no inside my brain it’s against pushing my left side I felt so alone for many year you tube help me build the confidence I have now 💜
Bless you and may God Keep you! My wife had a tumor on her Brain.They operated and Removed it! I will pray for you 🙏! God can help. I also have NF1 with seizures.
My only son , going to 12 yrs old, suffering from nf1 with all the signs and symptoms are mentioned in this video. Thanks God we're in HK, the government here are really good, provide all the treatment continuesly to helps my son could adapt with his condition. Wish, the environment could accept him no matter in the school or later on in working field. Thank you HK government, helping my family to facing this situation.
I am so glad, please let you know if you are fb, I am making a Facebook group for people with NF that aren’t located in the USA! So we can share and help. Sounds like your son is lucky, you care so much for him
I have this. I was perfectly fine but after my mother passed my grandmother took me to the doctor and that’s how I found out. I was lucky there was a tumor on my spine they took it out and about 2 years later they put 2 rods and 17 screws in my back. This video helps me understand what I have better.
I've got nf1 there's a big one on the bottom of my spine slightly above my bum, outside on the skin. Plexiform I believe. Was yours inside your body or? Thank you the comment.
Hi! So Koselgo which is for the plexiform type tumours and the other one that are lumps. Sadly I have an optic tumor so I can’t koselgo because it won’t help. The problem is that koselgo has many side effects. I hope they improve it and make it usable for both types of tumors
It’s nice to know I’m not alone, I have to wear a leg brace for life because of my Neurofibromatosis Type 1, and I also have learning problems, so when I meet people with the same disability as me, it makes me feel better about myself, I’m only 15 but like I said, I love meeting people in the same position as me
Could you imagine having not just a very severe case of NF-1 but ALSO be so unfortunate to be afflicted with another extremely rare condition called Proteus Syndrome that literally only affects 1 in 1 MILLION! This was the case with Joseph Merrick aka the infamous “Elephant Man”. He was probably one of the only people in history to inherit BOTH extremely rare conditions. This is why his symptoms were so rare and tragically so grotesque. This is because the symptoms that came with having NF-1 exasperated the symptoms that came with having Proteus Syndrome and vice versa. So, the cauliflower like skin condition that came his Proteus was made many times more horrific because the NF-1 then began to produce large tumors within the nerves of that skin causing him to have horrible cauliflower like, tumor filled growths all over his skin, essentially having both conditions ravage his epidermis. The same went for his bone structure and tissue. His grotesque deformities from Proteus were amplified and exaggerated by his NF-1. To top it off, he had a hip ailment that made his hip None of us could ever imagine let alone comprehend the pain and suffering that was bestowed upon him and the life of solitude and depression it forced him to live. There wasn’t a single documented case of someone having both conditions simultaneously before The Elephant Man and there hasn’t been one since, the odds are so incredibly rare.
I have NF1 when I met one of the leading doctors in that field he told me I was one of the luckiest patient he has ever seen. I would love to see a specialist in the field every year but of course the VA doesn't care about us
I myself a 34 year old male who is living with NF1 was only given 10 years to live granted I have other neurological disorders and other diseases such as hydrocephalus which is known as water on the brain granted I've had 40 brain surgeries do to this disease do to the Nora fibroma that's in the cerebral cortex of my brain it is a beautiful disease a life inspection C does not determine someone's Fate by a doctor because 10 years old is a long way away from 34 years old that was 24 years ago and I'm still alive still taking granted I have seen the light and felt the pain I'm still here that was only on the table during brain surgery nothing to do with the neurofibromatosis type 1 anyone who keeps a positive attitude can beat this disease
Well, all my life, I felt outcasted, alone, and misunderstood. It is rare to find someone who knows about this condition. My parents were really supportive, but I've always felt like a burden to them...I didn't know there were support groups. I don't think there is in my country, anyway. I wish I could talk to someone who has it. At least, to have someone who can hear me without looking with pity, who could share some concerns, fears, or doubts, to feel supported, at least...People don't get it, and, usually, they say that when I am not at my best I use this condition as an excuse :(. Thank you for taking the time to do such a good resume of NF1...having it sucks, it really, really sucks...I hate it :(
I live with NF1, it's sad that MOST of the people from my school, teachers and students don't accept me. There's also another person at my school with NF1 and the school still doesn't do much. -15 year old girl, Norway.
I am sorry dear. Just learn to accept yourself. We are all humans and it doesn't matter who accepts you. All that matters is that you are happy and your family is there for you. If you need help maybe you can dm me on Instagram 'Barryfrancis22'
@@barryfrancis9640 I had completely forgotten about this comment. Things are better now, my family has always accepted me for who I am. My mom also has it, so it’s not hard for her to try and understand. I am at a new school where they actually see the problems I have and take action.
Most docs even the "specialists" mentioned know little or nothing about NF.My neurologist said he had 6 patients,including myself, in a 30 year career on two coasts,that had NF. He at least knew the basics.So many know nothing
I have NF1. (In a very mild form thankfully). Can confirm that yearly checkups are not necessary. I’m 25yo and can’t remember if I ever had one. Only had a surgery once to remove a bump on my chin.
Dated a girl who has it. It ran in her family. It seemed like they were able to live mostly normal lives, but if I remember correctly, there were always risks of complications, and it becomes a bigger problem as they get older.
I have NF1 and Im in college. I'm 21 and It doesn't becomes a bigger problem. It get easier as you get older because you are use to having it. Its hard when you are little
I haven't got it bad luckily, not much physical signs except for the coffee stains lol. Just high blood pressure and shrunk blood vessels luckily for me.
@@laurens5622 How are you a blessing from God? I come from a family who have NF1 AND NF2 and other forms of NF. I Myself have NF2 I grew up with My own grandma and all of her sisters and brother having NF1 my grandma and her mom were covered long before I could remember them not having fibroid tumors all over their body. My great aunts and great uncle were the same way. My mom's two brothers had NF. My Uncle Dennis had NF1 and my other Uncle who was my Uncle David had NF2 was was blind and had several brain tumors when he was younger, teen years and when he was an adult. Both of my Uncle's passed away because of neurofibromatosis. I have had so many family members pass away because of this disease. I myself have NF2. I have never thought of it as a blessing or a curse. But please don't feel obligated to tell people that a disease is a blessing.
I had neurofibromathosis type 1, when I was 8 or 7 years old, my back was operated on for the first time. e. when I was 12 too. my back was 180 crooked then. During that operation I had 2 cardiac arrests. (because my heart had a very small space.) Since then I have been permanently in a wheelchair. and I've been calling myself a giraffe ever since I can talk. (because of the spots.) it is also a favorite animal of mine.
I have just been diagnosed with NF1 and I have the eyesight problem and the skin blotches and coffee marks, I'm not sure what is going to happen yet but I hope I'll be ok.
I have the Tumors and a coffee mark on the outside and people can be cruel I just say to them if I can live with it why would it worry you some people think that if I touched them in anyway that they can catch it😔
Same Here ☺️! Makes me feel alone also. Now my Seizures are what they call Refractory. I used to Drive and work but suddenly changed! Now at 56 I am for the Last 3 years isolated at Home. Miss work friends and Particularly my freedom of Driving! Subaru WRX I have! I Love the car but can't drive it! I also developed Deep Depression and Anxiety. Better now that I Developed my Faith in God and Jesus Christ! I do have a wife and daughter and Grandkids. A real Blessing! No you are not alone 😃! Been Dealing with this all my Life. Some times Better than others for a period. Bless you and may God be with you! I know how you feel.
my little sister has hf1 and she is the most beautiful person i know inside and out, she is 10 but sadly she is at a kindergarten reading level but she's getting better with reading. i love my smart beautiful girl
Hi, my seven year old son, has an F1, which heard from his father, I have a daughter, it skips her, and she does not have it, but my son does, he also has ADHD, and difficulty learning. He is seven, but functions at a kindergarten level. We are in the process of having an IEP for him as well. Is it a regular channel is class. Amongst his peers. But it’s nice to know I’m not alone, and that, even though he is alone with having this, I hope I can do right by him to help support him, in his life, my son name is Ryan with a sweet boy. I love him very much. We are all beautiful within our heart and soul. In F1, we can be survivors, I know that my son will, my children’s father has dealt with having enough one, he has, finger, visual impairment, and scoliosis, I believe, he does have multiple disabilities, therefore, he lives in a supportive living, Drew, Westside, original Center, referring to my children’s father, in with my phone in Harry, the NF, one, neurofibromatosis.
I have NF1 as well. My sister and I got it passed down from our father, I have a learning disability and high blood pressure. While my sister has the bone problem in her leg. (Neither has stopped us) I graduated high school and am now in college and I’m on the lowest dose of medication for my HBP. Bless everyone out there who has it, hope everyone who has it, nothing gets worse, and keep pushing forward. We are no different then anyone else out there.
I have a Neurofibromatosis type one . I had a tumor removed back in 2007 . Since then the back of my neck where I got it removed is showing signs it is slowly coming back . The biggest challenge was the awful leaning disability I have. At the time I was working it would affect my work.
I also have NF 1 I have scoliosis, have Cafs everywhere and have problem with my eye sight but I feel kind of lucky my scoliosis isn't that bad and I have to wear glasses to see better so I got of kind of light compared to other people
I am 17 and i have 47 neurofibromas over my entire body, I’m very scared that it will change, no one in our family has it so i have no idea how’ve i got it.
Not many people know this about me, but I was born with this birth defect. It was inherited from my father. I do indeed have ADHD and a learning disability although I have amazingly overcome those difficulties. I'm very fortunate in that my NF1 is very mild. I many friends who have it to disfiguring levels. Also have friends who have an NF2 which is a much more serious condition. The only reason why I share this is I ran across the video on UA-cam. I guess we all have our Oddities. I was only five years old when I was diagnosed. Way back then there wasn't much know about NF. While there's much more known now I still find it difficult Define a neurologist who understands the condition and can address my concerns. I certainly hope in the future this changes for the younger generation
Hi, my seven-year-old son, has an F1, in which he inherited from his father, and his father, inherited from his mother, therefore, my son has it, my son, Hospital has ADHD, and some learning difficulties as well, he also has, the café au lait spot, as well as having a lump, located on his left side, this is really starting to make more sense, I’m still learning about it, but now I’m looking at this, and understanding he has ADHD, and this associated with having neurofibromatosis, thanks, I appreciate that, because I did not know a lot about it and again, I’m still learning, just put the lot at perspective about my sons, disease, he’s a sweet boy, my son is seven. Bcc
Hi, my name is Davide I'm from Rome, I am diagnosed with nf1, I had café au lait and freckles in groin when I was a kid, lots of problems in school(narcolepsy, adhd...) I developed then those tumors. This gave me lots of problems finding a job, I a have been looked at like a leper, someone who shouldn't work for them because "what if you get sick?" and stuff, I felt pretty useless. While recently my father got a glioblastoma grade 4 diagnosis this month and I know I could risk it as part of this disease, I am scared of having a child in the near future and cursing him with something like I have and might degenerate in nf2, I always feel the urge to not let people see "the bumps" I have like on the back. Recently I went to a specialistic visit and they found a ramification on my scalp
Rome has a good NF centre have you contacted any of the NF organisations like Linfa? NF1 does not become NF2, they are 2 completely different conditions
I’m lucky that I have a sort of mild case of this.The main things that effect me are my voice(very weird tone and very very hard to understand) and my handwriting (very bad ) I don’t have any pain and and getting A’s in every class(honor classes)it does somewhat maybe effect my social skills though as I only have 1 or two friends who are not that close
I was diagnosed when I was 36 years old. My mother forced me to see a skin specialist, claiming that I could 'get some cream' for the lumps. when I told her what it was called and that it was genetic, she called me a liar. lol. Funnily, the only people who have ever ade me feel bad about my skin are my parents.
@@richardbowness1595 hello mate I was 20 when lumps started to grow all over my body arms hands neck forehead I am now 55 it did my learning at school it comes from your mum or dad I got it from my dads side nice to chat with someone else where do you have lumps
I have NF1 .it not passed my parents or my family.it's totally mutation .I am a agriculture engineer,and I am a professor in a agriculture college,as well I teaches 12th science students.I accepted that no cure for NF1.Now I am 31 years old.let see...
same , i also got NF 1 through mutation , and i am trying to accept it , now i am 1 year bsc nursing student..... NF affects me and my college life but i never give up.......and now i am university topper in my first semester exam 💐💐💐
To those with nf one Im making another nf video but like relatable things E.g. "things we often get told | Naurofibromatosis" or "neurofibromatosis and emotions" or "the struggles | Neurofibromatosis" Any other ideas or what youd like to see??
Theres treatment but no cure, I've had 4 operations to stretch out a blood vessels. The 4th time they opened me up they saw it healed itself! Never give up hope.
I’m 10 and I am suffering from this condition i have had it ever since birth and still have it. One of the worst things about it is I have spots and I have been made fun of cause of those spots.
Hello Peppa Pig. Are you in the UK? there is a charity called Childhood Tumour Trust that has days out so that you can meet other children your age who have NF1
Hi, my name is carolyn, I’m a mother to a seven-year-old, who also has MS one, I live in California, I have a beautiful seven year old boy with NF one, are you too often asked questions about why he looks different, because of the café au lait spots, in which he inherited from his father, I wish that I knew edison if you were going through this ordeal, he goes to a regular school as well. He has not told me up to that makes fun of him, which I hope there’s not, but I can’t even imagine what that feels like and my thoughts and prayers are with you. I am so sorry, that you had to endure that. No child should have to. Much love and regards sincerely, Carolyn and my son Ryan, who also has neurofibromatosis. ❤
I have over 100 birthmarks (some on brain) I have autism as well and ADHD I have hypo mobility and high blood pressure which led to middle aortic and renal artery stenosis ...
My 1st husband had it, he had some small lumps but then he got a large tumor on his arm, he had it removed, then they found cancerous tumors in his lungs which killed him at age 38 in 1996. We knew it was hereditary and chose not to have children. His twin brother has learning disabilities
A lady I have been recently in touch with recently told me her son Had to go for a yearly check up in Maryland And she was on vacation so this being on vacation and her son going to Maryland for his yearly check up was Mutually beneficial because she gets to spend time away from Connecticut with her family and he goes to his appointments as she told me because he has a genetic disorder... Well me being a medical assistant was very curious to find out what it was. She then sent me a link to see what it is and This is a very interesting disorder I don’t know exactly what it does to you but I will send prayers and love to everyone who does have it and I am interested in learning more and will check it out.
I have it, I was diagnosed at 7 months old The doctors said I was born with it because I had the obvious signs in looks, so they wanted to do a test, took 7 months to come through
I had no idea I had NF until I had a seizure and was given a full body X-ray. I always thought that everyone lived in a mild amount of discomfort but it turns out normal people feel... Well normal 😂
I got it on my whole body as well in private parts .... I was diagnosed as breast tumor alhumdulilah now fine and after 3 years i got bileteral brain tumor . I did my surgery radiation .... But lost my hearing.... But alhumdulilah for everything .... And hello my friends with the same problem ... Can u tell me someone of you got married ? And it transferred to your child or not? .... Bcx my parents dont have it why im worried that why i got it
ye problem mjhy b ha by birth mri age ab 38 ha or 32 m shadi hwi mre 2 kids hn un m 1 k ye ha body pa 1 sal ka beta ha 15 marks hn mre full body pa Tumor bn gye hn
my age is 17.. i am already depressed ... due to more promblem family issues and my loneliness,my study life etc i am just losing my hopes to live... and this disorder .. i didn't went to check up with doctor... my dad and my dad family having this disease... now i also having disease.. i can see some many dark brown dots in my skin and that dark brown dot are growing into lumps .. i already hating my life.... i don't have any hopes to live ... but i don't want to suicide.... i want nature death.. everyday i am wishing my death ...
🙏🇮🇳 namaste! Be positive, NF can't stop you from achieving your goals don't loss your hope,,,, i have NF as well, now i am 1 year bsc nursing student..... NF affects me and my college life but i never give up.......and now i am university topper in my first semester exam
my older brother john coxall died from this in 1998 he was 38. thankfully we had different fathers so im clear. but it fucked him up big time paralysed from neck down
Im happy that I was diagnosed very early (about 10years) but my grandfather was diagnosed only when he was old. Of course he had his bad lumps removed but it was still not a diagnosis. He has had many bigger lumps in hard spots. Luckily removed sucksesfully. Nlw he has marks of cancer treated but Im not too worried. I dont have many lumps just one on my neck and small on the side. I dont have many problems with learning or eysight, I have never even broken a bone. Only problem to me is that sometimes I get tired and its not normal, I get reeeally tired. One time I didnt have to do homework becourse of it
I am 12 and I have my nf1 and I have a huge birthmarnk on my leg there is also a big lump on it that hurts and alot of birthmarks on my body. I really hate it
therealstar479 therealstar479 There's always a chance to come back, that's the kind of disease. Unfortunately, we know that there is no cure, but it is important to learn to live with it. It's hard, but that's all we have left. *hugs*
My son does,, exactly the same as you going to 12 yrs old. you are not alone. Be strong. Seek for medical assistance in your place. Wish your government provide medical schedule to make you feel better. 🤗
It’s nice knowing I’m not alone
Same
Same
Me too
Horror movie fangirl 15 I’m too 🥴
NF 1 right here
I have Nf 1 and im able to work and do stuff on my own. I thank God everyday for allowing me to be here to do what I can
Hi David my doughter has nf1 and doctor examined her with MR of brain today. So me and wife very sad. Because the stains are in vein of brain. So we have too much sadly.. I want u ask; do u have stains in your brain ? Do you have stains on your body what name is cafe au lait ? I m curiousing what is waiting to my doughter in future ?.. :( so I read your comment and want write here, so hope answer me ..
Good
I'm also
@@malummahlukatHey! I can also anwser your questions regarding NF1 I got it so do on of my sons.
I have NF1, I did a paper on it. It was very interesting finding out all of the possible outcomes I’m thankful that I don’t have anything major.
Adalia Campbell same
Same! The worst thing my brother, mom and I all have is eyesight that isn’t as great. (We all have NF1)
Adalia Campbell how did you find information? I have it but my friend is doing a project and since it’s a rare disease he can’t find a lot of info
Same some people can lose their hearing but I have it and have no bumps or tumors (only in my brain right in the middle of my eyes were it connects to my brain)
@Anthonie White me and you are the same
I feel happy that people relate to me good bless everyone who has it and pray that it won't get worse
Thank you Leanne, God bless you. I have NF1 too.
Same. God bless you both ❤️
Thank you god bless you and your family
Same here even i m dealing with NF
I'm suffering with NF1 and NF2 can any one help me
My brother had this too. When my mother gave birth to him we notice that he has a lot of brown birthmarks in his whole body (like he is a dalmatian) so that was first symptoms then he has learning difficulties. And he was also diagnosed with severe Levoscoliosis which make him unable to sit for a long time. Sleeping is also difficult because he has to change position every 2-3hours. Operating his spine might took his life so we decided that we have to just let him enjoy his life. I just hope to those sufferers that, your family loves you and they will be there for you always. Im praying for you guys.
I didn't know that I had nuerofibromatosis type1 until I was pregnant with my 1st born son. I have had severe medical problems that there's no cure for any of my disorders. Nuerofibromatosis type1 has caused me too many medical problems. My DNA doesn't respond to majority of most medications. I also have had pulmonary problems, liver problems, incurable and intractable pain. Anxiety attacks, severe uncontrable twitching and tremors and seizures due to nuerofibromatosis type1 I'm 61 and they still continue to grow. Had 1 tumor removed from my bottom side and it think if grew back.
I have severe memory loss and learning disabilities as well. Tiny tumors in my mouth. Had hip replacement year's ago and I have not been able to walk ever since.
So he died?
😢😢i gave birth last month and my son had cafe o lei spots and his body..reading this comments makes me worried about him...
I have NF 1, too! Thanks for this! ❤
Me too
Mini MangoMyte me to
I do to
Me too
Teresa Vasser same
I have nf1. And recently got diagnose with a brain tumor. But it no inside my brain it’s against pushing my left side
I felt so alone for many year you tube help me build the confidence I have now 💜
I'm sorry that you are going through this! I also have nf1. 😒
Bless you and may God Keep you! My wife had a tumor on her Brain.They operated and Removed it! I will pray for you 🙏! God can help. I also have NF1 with seizures.
Had the same
We’re in this together and together as one we can overcome it.
My only son , going to 12 yrs old, suffering from nf1 with all the signs and symptoms are mentioned in this video.
Thanks God we're in HK, the government here are really good, provide all the treatment continuesly to helps my son could adapt with his condition.
Wish, the environment could accept him no matter in the school or later on in working field.
Thank you HK government, helping my family to facing this situation.
I am so glad, please let you know if you are fb, I am making a Facebook group for people with NF that aren’t located in the USA! So we can share and help. Sounds like your son is lucky, you care so much for him
Wishing you lots of health. I got diagnosed at twelve too. Which ain’t good by what the CHOP doctors said. Good luck!
@@amazingabby25 félicitations 👍
I live in hk too i have NF2 i have so many doctors here they said it has no treatment
Seen*
I have this. I was perfectly fine but after my mother passed my grandmother took me to the doctor and that’s how I found out. I was lucky there was a tumor on my spine they took it out and about 2 years later they put 2 rods and 17 screws in my back. This video helps me understand what I have better.
I’m sorry about your mother.
I've got nf1 there's a big one on the bottom of my spine slightly above my bum, outside on the skin. Plexiform I believe. Was yours inside your body or? Thank you the comment.
Get well soon i too have this in my whole body
My friend sent me this, I feel special knowing they trust me and letting me see how I can support them as before this I didn't know much about it.
I have NF1 and I find it very useful and informative. Thanks for the share.
Zubair me to
God please create some medicine or cure for nf.lets pray togather everyone.
I read somewhere they gave permission to test for a cure or treatment.
Aamen
There is medicine
Amen and than you for your support
Hi! So Koselgo which is for the plexiform type tumours and the other one that are lumps. Sadly I have an optic tumor so I can’t koselgo because it won’t help. The problem is that koselgo has many side effects. I hope they improve it and make it usable for both types of tumors
I'll tell you all how I got here. I literally just swiped on my keyboard about fifty times and this showed up as the first result.
Tropical Hydra ?
sending my prayers to everyone who has it, I hope you all know you are beautiful and loved ❤️
It’s nice to know I’m not alone, I have to wear a leg brace for life because of my Neurofibromatosis Type 1, and I also have learning problems, so when I meet people with the same disability as me, it makes me feel better about myself, I’m only 15 but like I said, I love meeting people in the same position as me
Manifesting good health for yoy
I have also Nf 1
Thank you for this video. I am here learning about a foster baby I recently got, and trying to learn everything I can about this!
Could you imagine having not just a very severe case of NF-1 but ALSO be so unfortunate to be afflicted with another extremely rare condition called Proteus Syndrome that literally only affects 1 in 1 MILLION! This was the case with Joseph Merrick aka the infamous “Elephant Man”.
He was probably one of the only people in history to inherit BOTH extremely rare conditions. This is why his symptoms were so rare and tragically so grotesque. This is because the symptoms that came with having NF-1 exasperated the symptoms that came with having Proteus Syndrome and vice versa.
So, the cauliflower like skin condition that came his Proteus was made many times more horrific because the NF-1 then began to produce large tumors within the nerves of that skin causing him to have horrible cauliflower like, tumor filled growths all over his skin, essentially having both conditions ravage his epidermis.
The same went for his bone structure and tissue. His grotesque deformities from Proteus were amplified and exaggerated by his NF-1.
To top it off, he had a hip ailment that made his hip
None of us could ever imagine let alone comprehend the pain and suffering that was bestowed upon him and the life of solitude and depression it forced him to live. There wasn’t a single documented case of someone having both conditions simultaneously before The Elephant Man and there hasn’t been one since, the odds are so incredibly rare.
I have nf1 too. I'm glad I'm not alone.
你是美国人吗？
I have NF1 when I met one of the leading doctors in that field he told me I was one of the luckiest patient he has ever seen. I would love to see a specialist in the field every year but of course the VA doesn't care about us
how old are you do you have tumers outsid am nina from algeria
@@nanibournine9629 33 and I have a few
@@bamacopeland4372 okay so you go regelery to docteur
I have NF1 since birth, my GP always got student Drs to diagnose me to see what I have, well most of them got it right.
I myself a 34 year old male who is living with NF1 was only given 10 years to live granted I have other neurological disorders and other diseases such as hydrocephalus which is known as water on the brain granted I've had 40 brain surgeries do to this disease do to the Nora fibroma that's in the cerebral cortex of my brain it is a beautiful disease a life inspection C does not determine someone's Fate by a doctor because 10 years old is a long way away from 34 years old that was 24 years ago and I'm still alive still taking granted I have seen the light and felt the pain I'm still here that was only on the table during brain surgery nothing to do with the neurofibromatosis type 1 anyone who keeps a positive attitude can beat this disease
Well, all my life, I felt outcasted, alone, and misunderstood. It is rare to find someone who knows about this condition. My parents were really supportive, but I've always felt like a burden to them...I didn't know there were support groups. I don't think there is in my country, anyway. I wish I could talk to someone who has it. At least, to have someone who can hear me without looking with pity, who could share some concerns, fears, or doubts, to feel supported, at least...People don't get it, and, usually, they say that when I am not at my best I use this condition as an excuse :(. Thank you for taking the time to do such a good resume of NF1...having it sucks, it really, really sucks...I hate it :(
Hello if you email me I may be able to help you find a support group vanessa@childhoodtumourtrust.org.uk
Hey ... here my number 2294215232. Text me.
I know that because I'm also suffering from this situation and no one talk to me every one looking on my NF face.. I hate this
@@vanessamartin7912 thank you!!! I don't know why UA-cam didn't notify me with your answer, I will send you an email. Thank you💚💚
@@bobmikey5892 do you have whatsapp or telegram? I am Portuguese, living in Portugal, so it's a little bit expensive texting 😁
I live with NF1, it's sad that MOST of the people from my school, teachers and students don't accept me. There's also another person at my school with NF1 and the school still doesn't do much.
-15 year old girl, Norway.
Night Howlers hi
Night Howlers Just remember you will always be beautiful no matter what anyone says. Who cares what other people say.
I am sorry dear. Just learn to accept yourself. We are all humans and it doesn't matter who accepts you. All that matters is that you are happy and your family is there for you. If you need help maybe you can dm me on Instagram 'Barryfrancis22'
@@barryfrancis9640 I had completely forgotten about this comment. Things are better now, my family has always accepted me for who I am. My mom also has it, so it’s not hard for her to try and understand. I am at a new school where they actually see the problems I have and take action.
@@okas425 I didn’t even know this comment existed. Sorry for such a late reply.
Same it's nice knowing I'm not alone
I apparently have this ,,is it life threatening I’m kinda scared :(
I also have neurofibromatosis. Thanks for this.
Do you live in Japan? I’m asking because my family and I are planning to move there. And we are looking for a pediatric NF clinic.
I only have two, one in each of my forearms. They’re pretty small and, while the pain comes and goes, it’s not bad enough for me to get them removed
Most docs even the "specialists" mentioned know little or nothing about NF.My neurologist said he had 6 patients,including myself, in a 30 year career on two coasts,that had NF. He at least knew the basics.So many know nothing
I have NF1. (In a very mild form thankfully). Can confirm that yearly checkups are not necessary. I’m 25yo and can’t remember if I ever had one. Only had a surgery once to remove a bump on my chin.
cool video (I have NF) and it was more useful than doctors...
plz doante any amount paypal.me/pools/c/80x64UvMUj
Megan Howie me to
Megan Howie I also have in NF1
I have nf1 too
I also have NF1
Çok teşekkürler ,çok iyi bir bilgilendirme
Dated a girl who has it. It ran in her family. It seemed like they were able to live mostly normal lives, but if I remember correctly, there were always risks of complications, and it becomes a bigger problem as they get older.
I have NF1 and Im in college. I'm 21 and It doesn't becomes a bigger problem. It get easier as you get older because you are use to having it. Its hard when you are little
Let me know how feel at 53. It sucks.
My father has it nd he is also completely fine 💛@@TheNeuroticjetfan
Glad to have videos like this to educate others
Absolutely lovely presentation 👌🏽
I have it as well, just know that no matter how you look you are beautiful, even with NF ☺️♥️
Noice we have two things in common we have nf 1 and we both watch sml i think
bjorn katsmar I watch sml yes
Spongette You too? What a foursome
I haven't got it bad luckily, not much physical signs except for the coffee stains lol. Just high blood pressure and shrunk blood vessels luckily for me.
I have NF1 too thanks for this!!
Hello.. I have nf . 1
I have nf1
To WHOMEVER Has NF1, Please Know And Understand That You Are Truly A Blessing From GOD!
(Also I'm A Mother Of An 5year old That Has NF1)
I have NF1 😢😢😢😢😢
I have NF1 too
@@laurens5622 How are you a blessing from God? I come from a family who have NF1 AND NF2 and other forms of NF. I Myself have NF2 I grew up with My own grandma and all of her sisters and brother having NF1 my grandma and her mom were covered long before I could remember them not having fibroid tumors all over their body. My great aunts and great uncle were the same way. My mom's two brothers had NF. My Uncle Dennis had NF1 and my other Uncle who was my Uncle David had NF2 was was blind and had several brain tumors when he was younger, teen years and when he was an adult. Both of my Uncle's passed away because of neurofibromatosis. I have had so many family members pass away because of this disease. I myself have NF2. I have never thought of it as a blessing or a curse. But please don't feel obligated to tell people that a disease is a blessing.
I had neurofibromathosis type 1, when I was 8 or 7 years old, my back was operated on for the first time. e. when I was 12 too. my back was 180 crooked then. During that operation I had 2 cardiac arrests. (because my heart had a very small space.) Since then I have been permanently in a wheelchair.
and I've been calling myself a giraffe ever since I can talk. (because of the spots.) it is also a favorite animal of mine.
Childhoodt Tumour Trust have a giraffe called Patches as their mascot.
@@vanessamartin7912 i knowI have many, that's why I call myself a giraffe. 🙂
Me too it's nice to know I'm not the only one sometime I feel like I'm alone😕😕
Ann murley your not 😭😔I don’t want to get the dots
Me too
Just Another Persons Life I’ve had NF for nearly 17 years and I got one on my stomach n neck, believe me don’t be upset. N self continuous with them c
I have just been diagnosed with NF1 and I have the eyesight problem and the skin blotches and coffee marks, I'm not sure what is going to happen yet but I hope I'll be ok.
I have the Tumors and a coffee mark on the outside and people can be cruel I just say to them if I can live with it why would it worry you some people think that if I touched them in anyway that they can catch it😔
u will be
Love to all my nf brothers and sisters.
I dont have a diagnosis for it, but when I was born my mom said the doctor helping her knew right away something was up with me.
Same Here ☺️! Makes me feel alone also. Now my Seizures are what they call Refractory. I used to Drive and work but suddenly changed! Now at 56 I am for the Last 3 years isolated at Home. Miss work friends and Particularly my freedom of Driving! Subaru WRX I have! I Love the car but can't drive it! I also developed Deep Depression and Anxiety. Better now that I Developed my Faith in God and Jesus Christ! I do have a wife and daughter and Grandkids. A real Blessing! No you are not alone 😃! Been Dealing with this all my Life. Some times Better than others for a period. Bless you and may God be with you! I know how you feel.
my little sister has hf1 and she is the most beautiful person i know inside and out, she is 10 but sadly she is at a kindergarten reading level but she's getting better with reading. i love my smart beautiful girl
Hannah F hf1 or nf1? Just making sure there isn’t a typo.
I TOLD YOU NOT TO TOUCH IT! nf1 it was a typo oops
Hi, my seven year old son, has an F1, which heard from his father, I have a daughter, it skips her, and she does not have it, but my son does, he also has ADHD, and difficulty learning. He is seven, but functions at a kindergarten level. We are in the process of having an IEP for him as well. Is it a regular channel is class. Amongst his peers. But it’s nice to know I’m not alone, and that, even though he is alone with having this, I hope I can do right by him to help support him, in his life, my son name is Ryan with a sweet boy. I love him very much. We are all beautiful within our heart and soul. In F1, we can be survivors, I know that my son will, my children’s father has dealt with having enough one, he has, finger, visual impairment, and scoliosis, I believe, he does have multiple disabilities, therefore, he lives in a supportive living, Drew, Westside, original Center, referring to my children’s father, in with my phone in Harry, the NF, one, neurofibromatosis.
wait what
somebody help
also have intractable disease
I was bullied for being different.(T . T)
ଓここଓ ik it’s easier said than done but stay strong just know that u r beautiful and amazing and u deserve the infinity 💜💜💜
*ଓここଓ you were made special for a reason* 💚💙 #EndNF
Me too ppl made fun of me
I have nf type 1 and no one in my family has it it's a genetic mutation
I'm the same way. I have and no one else in my family has it.
i got it from my mom it is made .
my father had this. I am suffering soo much because i have NF
Same, It caused me to have a tumor on my right shin, and I might have a brain tumor
same bro
Yikes every year I haven't gone to the Dr for this since I was 14 lol
Your a US citizen im guessing
I have NF1 thanks for sharing the information.
I'm proud of having nf1 sometimes I'm scared but have to live life
keep fighting
@@Shadmannnn thanks man
It hurts when people ask what's wrong with my skin
I have NF1 as well.
My sister and I got it passed down from our father, I have a learning disability and high blood pressure. While my sister has the bone problem in her leg. (Neither has stopped us) I graduated high school and am now in college and I’m on the lowest dose of medication for my HBP.
Bless everyone out there who has it, hope everyone who has it, nothing gets worse, and keep pushing forward. We are no different then anyone else out there.
josh mo same I have high blood pressure and got scoliosis from it. My blood pressure is from 130-150 but I’ve never got anything for it yet
I have Nf1 and was diagnosed at birth
I have a Neurofibromatosis type one . I had a tumor removed back in 2007 . Since then the back of my neck where I got it removed is showing signs it is slowly coming back . The biggest challenge was the awful leaning disability I have. At the time I was working it would affect my work.
When did you get your 1st tumor
@@heybubs2803 I had it when I was a baby. Now it looks like it may be growing back . And I hope it's doesn't come back .
apny iska treatment kahan sy krvya mjhy ye issue ha or bht zayda tumour ha full body pa plz help me guide kr dy iska koi b treatment ho
I have this, it runs in my family. My mom, be, and I all have it
Tysm For this video God Bless 🙏🏾
I also have NF 1
I have scoliosis, have Cafs everywhere and have problem with my eye sight but I feel kind of lucky my scoliosis isn't that bad and I have to wear glasses to see better so I got of kind of light compared to other people
I have nf1 since 4 months old , 6 times operation on my left cheek . Now better than the pass
Aku juga terkna tubuh ku 25%nf1
I am 17 and i have 47 neurofibromas over my entire body, I’m very scared that it will change, no one in our family has it so i have no idea how’ve i got it.
你是荷兰人吗？
Not many people know this about me, but I was born with this birth defect. It was inherited from my father. I do indeed have ADHD and a learning disability although I have amazingly overcome those difficulties. I'm very fortunate in that my NF1 is very mild. I many friends who have it to disfiguring levels. Also have friends who have an NF2 which is a much more serious condition. The only reason why I share this is I ran across the video on UA-cam. I guess we all have our Oddities. I was only five years old when I was diagnosed. Way back then there wasn't much know about NF. While there's much more known now I still find it difficult Define a neurologist who understands the condition and can address my concerns. I certainly hope in the future this changes for the younger generation
Hi, my seven-year-old son, has an F1, in which he inherited from his father, and his father, inherited from his mother, therefore, my son has it, my son, Hospital has ADHD, and some learning difficulties as well, he also has, the café au lait spot, as well as having a lump, located on his left side, this is really starting to make more sense, I’m still learning about it, but now I’m looking at this, and understanding he has ADHD, and this associated with having neurofibromatosis, thanks, I appreciate that, because I did not know a lot about it and again, I’m still learning, just put the lot at perspective about my sons, disease, he’s a sweet boy, my son is seven. Bcc
Hi, my name is Davide
I'm from Rome, I am diagnosed with nf1, I had café au lait and freckles in groin when I was a kid, lots of problems in school(narcolepsy, adhd...) I developed then those tumors.
This gave me lots of problems finding a job, I a have been looked at like a leper, someone who shouldn't work for them because "what if you get sick?" and stuff, I felt pretty useless.
While recently my father got a glioblastoma grade 4 diagnosis this month and I know I could risk it as part of this disease,
I am scared of having a child in the near future and cursing him with something like I have and might degenerate in nf2, I always feel the urge to not let people see "the bumps" I have like on the back.
Recently I went to a specialistic visit and they found a ramification on my scalp
Rome has a good NF centre have you contacted any of the NF organisations like Linfa? NF1 does not become NF2, they are 2 completely different conditions
@@vanessamartin7912 I did I'm in cure at Umberto I as for now, they keep it under control
I have NF1 and only have epilepsy. I'm pretty blessed.
I have it from a genetic mutation, neither parent has it. Woohooooo!
BmoreBirds22 same here
same
BmoreBirds22 me too! When I was a kid my parents would call me a mutant (like in X-Men lol)
Same
It can be passed by genes even though your parents do not have it
I’m lucky that I have a sort of mild case of this.The main things that effect me are my voice(very weird tone and very very hard to understand) and my handwriting (very bad ) I don’t have any pain and and getting A’s in every class(honor classes)it does somewhat maybe effect my social skills though as I only have 1 or two friends who are not that close
very informative, i have NF1 that disfigured my face to look almost like the drawing, but on the other side.
Tim Karlsson I have nf one and my face looks like the picture so it looks like my ear is swollen
I have extremely mild nf1 so I won't get the cancerous fibromas
Same are you affected at all ? Like are there any signs on you I have a tumor in my left ear canal
Ÿà fàv Dárkškîñ well some people get ADD/ADHD from it (I have ADD and a tumor in my brain)
I was diagnosed when I was 36 years old. My mother forced me to see a skin specialist, claiming that I could 'get some cream' for the lumps. when I told her what it was called and that it was genetic, she called me a liar. lol. Funnily, the only people who have ever ade me feel bad about my skin are my parents.
@@richardbowness1595 hello mate I was 20 when lumps started to grow all over my body arms hands neck forehead I am now 55 it did my learning at school it comes from your mum or dad I got it from my dads side nice to chat with someone else where do you have lumps
I used to have a Plexiform Nerofibroma on my side that bothered me for years till I had enough of it and told my parents I wanted it out.
I have NF1 .it not passed my parents or my family.it's totally mutation .I am a agriculture engineer,and I am a professor in a agriculture college,as well I teaches 12th science students.I accepted that no cure for NF1.Now I am 31 years old.let see...
I have nf 1
same , i also got NF 1 through mutation , and i am trying to accept it , now i am 1 year bsc nursing student..... NF affects me and my college life but i never give up.......and now i am university topper in my first semester exam 💐💐💐
To those with nf one
Im making another nf video but like relatable things
E.g. "things we often get told | Naurofibromatosis" or "neurofibromatosis and emotions" or "the struggles | Neurofibromatosis"
Any other ideas or what youd like to see??
MeggStan link ?
I don't know if anyone can relate, but I use to get picked on for my Cafe au lait spots and for my few small tumors.
I don't only have NF1 I also have NF2. Its nice knowing i'm not alone.
Is their any treatment for neurophybromytosis... i m having this from 14 years
shweta panchariya neurofibromas* and I don’t think so
No cure
Theres treatment but no cure, I've had 4 operations to stretch out a blood vessels. The 4th time they opened me up they saw it healed itself! Never give up hope.
I’m 10 and I am suffering from this condition i have had it ever since birth and still have it. One of the worst things about it is I have spots and I have been made fun of cause of those spots.
Hello Peppa Pig. Are you in the UK? there is a charity called Childhood Tumour Trust that has days out so that you can meet other children your age who have NF1
vanessa martin I’m not in the UK but I do appreciate that you tried to help me thanks
yes we will always have it unfortunatly its a chronic illness
@@vanessamartin7912 how can i look into that?
Hi, my name is carolyn, I’m a mother to a seven-year-old, who also has MS one, I live in California, I have a beautiful seven year old boy with NF one, are you too often asked questions about why he looks different, because of the café au lait spots, in which he inherited from his father, I wish that I knew edison if you were going through this ordeal, he goes to a regular school as well. He has not told me up to that makes fun of him, which I hope there’s not, but I can’t even imagine what that feels like and my thoughts and prayers are with you. I am so sorry, that you had to endure that. No child should have to. Much love and regards sincerely, Carolyn and my son Ryan, who also has neurofibromatosis. ❤
Thanks for this video
I'm developing so many birthmarks in my back
I have A huge one on my back
Hey can you please update your current situation
I've got the small lumps and they're so annoying like the one on my forehead, neck and mostly my left side
I have over 100 birthmarks (some on brain)
I have autism as well and ADHD I have hypo mobility and high blood pressure which led to middle aortic and renal artery stenosis ...
My 1st husband had it, he had some small lumps but then he got a large tumor on his arm, he had it removed, then they found cancerous tumors in his lungs which killed him at age 38 in 1996. We knew it was hereditary and chose not to have children. His twin brother has learning disabilities
A lady I have been recently in touch with recently told me her son Had to go for a yearly check up in Maryland And she was on vacation so this being on vacation and her son going to Maryland for his yearly check up was Mutually beneficial because she gets to spend time away from Connecticut with her family and he goes to his appointments as she told me because he has a genetic disorder... Well me being a medical assistant was very curious to find out what it was. She then sent me a link to see what it is and This is a very interesting disorder I don’t know exactly what it does to you but I will send prayers and love to everyone who does have it and I am interested in learning more and will check it out.
Glad I’m not the only one
I have it, I was diagnosed at 7 months old
The doctors said I was born with it because I had the obvious signs in looks, so they wanted to do a test, took 7 months to come through
I have nf1. feel like I'm the only one who have it
I do too
I do and it came wuth hdhd
متی ظهرت علیک الحبوب
I have nf1
I had no idea I had NF until I had a seizure and was given a full body X-ray. I always thought that everyone lived in a mild amount of discomfort but it turns out normal people feel... Well normal 😂
I have nf1 ADHD and epilepsy
I got it on my whole body as well in private parts .... I was diagnosed as breast tumor alhumdulilah now fine and after 3 years i got bileteral brain tumor . I did my surgery radiation .... But lost my hearing.... But alhumdulilah for everything .... And hello my friends with the same problem ... Can u tell me someone of you got married ? And it transferred to your child or not? .... Bcx my parents dont have it why im worried that why i got it
50-50 chances of transfer to child
ye problem mjhy b ha by birth mri age ab 38 ha or 32 m shadi hwi mre 2 kids hn un m 1 k ye ha body pa 1 sal ka beta ha 15 marks hn mre full body pa Tumor bn gye hn
my age is 17.. i am already depressed ... due to more promblem family issues and my loneliness,my study life etc i am just losing my hopes to live... and this disorder .. i didn't went to check up with doctor... my dad and my dad family having this disease... now i also having disease.. i can see some many dark brown dots in my skin and that dark brown dot are growing into lumps .. i already hating my life.... i don't have any hopes to live ... but i don't want to suicide.... i want nature death.. everyday i am wishing my death ...
Hi
🙏🇮🇳 namaste!
Be positive, NF can't stop you from achieving your goals don't loss your hope,,,, i have NF as well, now i am 1 year bsc nursing student..... NF affects me and my college life but i never give up.......and now i am university topper in my first semester exam
You can get everything that you want in your life, you have a lot of strength and intelligence, recognize your power and get success in your life.
I am in the trial program for Koselugo in adults with plexiform tumors
I have NF but don't know is it NF1,NF2 or NF3..I have six tumors in my body..one is newly appeared on face..
Diagnosed at 14, now 55, 3 surgeries but nothing more serious.
my case is so mild I didn't even know I had nf1 until I was 17. I do have a few cafe spots though and subcutaneous fibromas
Me and my twin brother have NF1. Is there any therapy that can help to reduce or eliminate it without surgery?
Anti inflammatory medicines. See your doctor.
my older brother john coxall died from this in 1998 he was 38. thankfully we had different fathers so im clear. but it fucked him up big time paralysed from neck down
I was diagnosed with nf1 DNA test, but I have none of these symptoms, only small (internal) fibroids on the spine......
I have nf please mam koi treatment btao please please 😥😥😥😥😥
Hanji koi treatment nhi hai iska🙏🙏
Baccho ke liye aa gai hai medicine for plexiform neurofibroma par adults ke liye nahi hai
I have nf1 ❤️
Im happy that I was diagnosed very early (about 10years) but my grandfather was diagnosed only when he was old.
Of course he had his bad lumps removed but it was still not a diagnosis. He has had many bigger lumps in hard spots. Luckily removed sucksesfully. Nlw he has marks of cancer treated but Im not too worried.
I dont have many lumps just one on my neck and small on the side. I dont have many problems with learning or eysight, I have never even broken a bone. Only problem to me is that sometimes I get tired and its not normal, I get reeeally tired. One time I didnt have to do homework becourse of it
My little brother just was dignosed with this and i hope he will be okay
He will I have it too :)
I am 12 and I have my nf1 and I have a huge birthmarnk on my leg there is also a big lump on it that hurts and alot of birthmarks on my body. I really hate it
xXLocketXx jewels i know how you feel. Lucky for us, plastic surgery exists. Stay strong honey. ❤️
@@yukiwrites you have neurofibromatosis two it's the worst but I'm sacred of plastic surgery if you get the bumps removed want it grow back
therealstar479 therealstar479 There's always a chance to come back, that's the kind of disease. Unfortunately, we know that there is no cure, but it is important to learn to live with it. It's hard, but that's all we have left. *hugs*
My son does,, exactly the same as you going to 12 yrs old.
you are not alone. Be strong. Seek for medical assistance in your place. Wish your government provide medical schedule to make you feel better. 🤗
all those referrals and you didnt mention PT! we treat low tone, balance issues, msk issues, gait problems...
We apologise, it wasn't a finite list. But absolutely yes you are important in many patient's lives.
I’ve got it. The bloody thing put in hospital for a month