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 ..
My mom, my sister, and I have neurofibromatosis, they both have glasses but I’m lucky and I don’t yet... we do have to get our eyes checked every single year because of it
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
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
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 :(
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
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 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
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.
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. (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 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.
@@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 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.
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.
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??
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😔
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 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.
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 .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 💐💐💐
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
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
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 RU-vid. 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
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
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 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’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 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.
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
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.
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
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 ...
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. 🤗
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 😂
as some one who has NF1. I have 1 tumor in my back. It makes my back hurt a lot. and I have to have a surgery every 8 moths in-till I am 18. Years old and it will be every 3 years.
You could try wim hoff breathing if you ever feel down it makes you feel so carefree and its like this feeling where all your problems in life just go away for that time untill they come back you can do it again ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-tybOi4hjZFQ.html .
Hello everyone, I have a cousin who is 3 years old, doctor diagnosed her with N1 , we are so afraid and we are all in stress now, how her future would be who can tell me about this illness, what should we do for her ??? 😭😭😭😭😭
Hello ! A diagnosis at 3 years old is very early so there is many thing to do (and time) Ask to the doctor who diagnosed N1 what you can do. To reassure you, in my case I had see many specialists during my childhood but now everything is fine, I am at university and I live a normal life.
Hello - I am unsure where you live but it may be worth seeing if there is an organisation in your country who can help support you. Childhood Tumour Trust are based in the UK but they have a facebook support group that welcomes everyone whereever they live..
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
My 8 year old son has NF1 I found out when he was a little baby he had a few cafe spots and my mom and I wonder what that was no doctors where we live knew about it except one we montier him all the time he has a tumor on his back close to his spine more cafe spots everywhere now and idk if it's effecting his eyesight because he blinks a lot at moments way to much does anyone else have that as well? We have to take him to another city for MRI to monitor his tumor and how it's doing and see if he needs surgery he does have tough time learning but he gets it done he is a normal little boy and very sweet and kind I always fear for him but I pray for him constantly he got it from his bio dad's side (this is mom btw) hate it becuz I wish he wudve told me that he has it too and educate me about it but it's over and done with I love my son he is my 1st born and I promised him I would protect him always i will always be there for him and help him go threw this journey with 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
I have Neurofibromatosis type 1 I get very bad pains all day and every day and some people dont even care about my pains and when i do get pains they laugh
