What is Neurofibromatosis Type 1 (NF1)?

Hello, in this HealthSketch, we want to talk to you about Neurofibromatosis. It’s a bit hard to say, but the name makes
sense: “Neuro” means the nerves in the body, while “fibromas” are the lumps that
occur with the condition. There are different types of Neurofibromatosis,
and in this video we’ll be talking about the most common type, NF1, which approximately one in every 2700 people are born with. It is caused by a change in your genes, which is either inherited from a parent, or a new random change in the cells that create a baby. This genetic change causes lumps to grow on the nerves. A number of different criteria are used to
help diagnose NF1, and genetic testing may also be used. The most noticeable signs appear on the skin, which might be present at birth, or may develop in early childhood: Flat, light brown patches on the skin, called “café au lait” spots, or ‘CALS’ because
they are a similar colour to milky coffee. They are often dismissed as just birthmarks. Freckles in unusual places such as the armpits or groin. Lumps or bumps, either on or under the skin, which vary in size and number. Small lumps called cutaneous neurofibromas are generally harmless and there may be few or many. Large lumps, called plexiform neurofibromas, tend to be few in number and are more likely to cause problems. Doctors can advise if removal or medication is possible. It’s important to know that NF1 affects
everyone differently. Whilst some will have only mild symptoms, NF1 varies so much that others may have serious complications and additional related conditions. These might include: Learning difficulties, autism or ADHD: which will probably require more support in school Problems with the joints and the  bones, such as hypermobility, fractures, curving
of the legs or spine, and changes to the shape of the chest wall. Problems with eyesight, if the nerve to the
eye is affected High blood pressure which can be a sign of other complications Epilepsy and other symptoms that relate to the nervous system Disfigurement, which may or may not cause anxiety and impact on quality of life In some cases, tumours such as brain and breast cancer Because of this risk of complications, and
because NF1 can change over time, it is important to report new or changing symptoms to your doctor so that problems can be picked up early. You should also have a routine check-up at least every year with someone who knows about the condition. Further tests may be required, such as an
imaging test, and there may be treatments for specific problems, such as surgery. Depending on the symptoms experienced, a team of professionals might be involved in care, such as a paediatrician, geneticist, neurologist, dermatologist, eye specialist, bone specialist, oncologist, psychologist, and others. It is common to sometimes feel worried or upset about having NF1 or having a child with NF1, and you should discuss these feelings
with your doctor. Online support groups are a good source of support, as you can connect to others who have had similar experiences. While there is no cure for NF1, and in some cases it can lead to serious complications and reduced life expectancy, with regular check-ups and appropriate care, many people with NF1 can lead fulfilling lives. In this HealthSketch, we’ve talked about
Neurofibromatosis Type 1, a genetic condition that causes lumps to grow on the nerves. We’ve talked about why it occurs, the main signs, the more serious problems to be aware of, and how it is managed. We hope this HealthSketch has been helpful to you and those around you.

100 Replies to “What is Neurofibromatosis Type 1 (NF1)?”

  1. I have nf1 i have birthmarks all over my body and it really affects my height and my growth im a 15 year old boy and im only 5"1 and am now just hitting puberty

  2. I have NF and it cause my right leg to be curved and it caused me to have Scoliosis (where my spine is curved) and my back always gets sore during long car rides,it can also be hard casue I am a dancer

  3. Wow its cool to find a community of people with NF….. insecurity is toughest part man im trying to raise money to get my ankle worked on https://www.gofundme.com/5ek54rk

    Hate to beg or seem like a beggar

  4. 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.

  5. i have also have nf and i complete understand it but i will tell u this plz i am telling the truth plz listen to me u have to stay off of all soda and stay away from cafine plz i have it if u all have more question i mean fell free to sms me you don't have 2 give me anything i will leave my number 954-317-9828 plz i can help

  6. 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.

  7. 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.

  8. 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..

  9. 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

  10. I have this but THANK GOD SO MUCH I only have a few cafe latte spots, very slight scoliosis (no brace or surgery needed) and the freckles in “weird places”. I am so happy that NH1 doesn’t affect my everyday life in the slightest and never have to explain to anyone that I have it. I got an eye check from an optometrist bc my eye sight could have been bad but it’s almost person and I will probably not need glasses until I’m an adult of elderly, unless I choose to get them but they say I really don’t need them as of now. I am in AP classes and advance maths in high school (I was bad at school growing up but always “street smart”). I’m sorry for ranting and flexing but I was really scared when I started webMD all of this and reading comments made me feel much better about my self. I hope all of u who have a severe case find love and comfort in yourselves because you are beautiful the way you were created

  11. 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 ?

  12. I have it and I thought i was the only one ???
    Please comment to make me happy ?
    Edit:Please answer this is it good? Is it harmful? Does it damage you evreytime?
    Edit 2: is it everytime pr evreytime?
    Edit 3:or*
    Edit 4:I also wish that I was a normal person T-T

  13. i have nf and i have had sharp pains in my back off my legs for years now and i have had yest and mris to find out what is causeing the pain can it be nf what is causeing the pain

  14. 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.

  15. 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??

  16. My son has recently been diagnosed with this ,he has had a fractured arm when he was a baby now he's 7 an is a waiting surgery in the coming months ahead ,I'm wondering should I go ahead with surgery or wait right now he has full use of his arm and cheerful, I don't want to change that ,don't know if it may be risky doing the surgery??

  17. As a 17-year-old girl neurofibromatosis 1 has ruined my life, it makes me so sad and unhappy. People always look at my skin funny and even laugh at me, I got bullied countless times because of it, I can't wear anything short or low cut, I feel so embarrassed and insecure when I'm around people, especially boys ????????. It caused me to have depression and anxiety. I have no one to talk to, no one understands and no one ever will. I hate the fact I have to carry this burden with me. I will never get a boyfriend I will forever be a virgin.

  18. hey hello everyone …. I myself have the disease nf1 …. and it is very hard that people do not accept you …… outside one dear woman of course

  19. I have 2 plexiform neurofibromas thankfully they are not too visible I have one on my thigh which is mostly harmless and on my ankle which is the one my doctor watches

  20. I have NF1 as well. It's really hard because it's difficult for me to make friends. I don't have it as bad as people with Aspergers, but I struggle in social situations, especially if it's some I just met or I'm getting to know. I also have a brain tumor, and I get migraines easily. I also have really poor balance and hand-eye-cordination. I'm thankful I don't have many spots or lumps on my face, but they're all over my stomach. Whenever someone sees me without my shirt, I always get asked, and I don't want to tell anyone. Even some of my closest friends don't know. (Though I don't have many really.) If anyone would like to talk, please DM me on Twitter @ScottSullivanTV

  21. i am also sufering with this diseas
    as per my resaearch i am sufering with type 1 my face's left side is effected

  22. 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 YouTube. 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

  23. 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.

  24. 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

  25. 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.

  26. 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

  27. I've got the small lumps and they're so annoying like the one on my forehead, neck and mostly my left side

  28. I have it as well, just know that no matter how you look you are beautiful, even with NF ☺️♥️

  29. 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.

  30. I have NF 1..i just want ask..how can i get married if i have this skin disease..??..im not confident with myself..i dont know why i feel like this but i have no confident because of my skin..even people around doesnt care about my skin..they just be my friend..and in fact they never ask about my skin..but only me feel like im useless..??

  31. I have NF1 it made me not ablw to play football due to the loaction of two of my fibromas but It is nice knowing im not alone is it possible to skip generations at all?

  32. 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 …

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