Neurofibromatosis, Causes, Signs and Symptoms, Diagnosis and Treatment.
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- Опубліковано 27 чер 2024
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Chapters
0:00 Introduction
1:10 Causes of Neurofibromatosis
2:42 Symptoms of Neurofibromatosis
3:59 Diagnosis of Neurofibromatosis
Neurofibromatosis (NF) is a group of three conditions in which tumors grow in the nervous system.[1] The three types are neurofibromatosis type I (NF1), neurofibromatosis type II (NF2), and schwannomatosis.[1] In NF1 symptoms include light brown spots on the skin, freckles in the armpit and groin, small bumps within nerves, and scoliosis.[2] In NF2, there may be hearing loss, cataracts at a young age, balance problems, flesh colored skin flaps, and muscle wasting.[2] In schwannomatosis there may be pain either in one location or in wide areas of the body.[3] The tumors in NF are generally non-cancerous.[1]
The cause is a genetic mutation in certain oncogenes.[1] These can be inherited from a person's parents, or in about half of cases spontaneously occur during early development.[1] Different mutations result in the three types of NF.[4] Neurofibromatosis arise from the supporting cells of the nervous system rather than the neurons themselves.[1] In NF1, the tumors are neurofibromas (tumors of the peripheral nerves), while in NF2 and schwannomatosis tumors of Schwann cells are more common.[1] Diagnosis is typically based on symptoms, examination, medical imaging, and biopsy.[5][3] Genetic testing may rarely be done to support the diagnosis.[2]
There is no known prevention or cure.[1][2] Surgery may be done to remove tumors that are causing problems or have become cancerous.[1] Radiation and chemotherapy may also be used if cancer occurs.[1] A cochlear implant or auditory brainstem implant may help some who have hearing loss due to the condition.[1]
In the United States, about 1 in 3,500 people have NF1 and 1 in 25,000 have NF2.[1] Males and females are affected equally often.[2] In NF1, symptoms are often present at birth or develop before 10 years of age.[1] While the condition typically worsens with time, most people with NF1 have a normal life expectancy.[1] In NF2, symptoms may not become apparent until early adulthood.[1] NF2 increases the risk of early death.[1] Descriptions of the condition occur as far back as the 1st century.[6] It was formally described by Friedrich Daniel von Recklinghausen in 1882, after whom it was previously named.[4]
NF2 here, I'm glad you represented the info well. Thank you ❤
Thank you Very much Doctor I'm favourite your lecture
Nice presentation
Great video! Thank you so much!
Thanks
I am from Ghana 🇬🇭, and I have been suffering from Neurofibromatosis since childhood. I am now 26yrs. The doctors says it has no cure and the only thing they can do is to remove the larger growth. I have a lot of smaller growth all over my body and it not easy living this way 😔.
❤❤❤
I am 46 - I know the pain you suffer.
@@JonnyOpinionated It’s not easy.
I can understand your pain..
At what age you start getting nurofibroma tumors?
I have nf1 and its painful
Thank you so much
Interesting genetic lessons,
Can we get any medical treatment in future for nf1. there is any possibility that we will recover from it
I suffer from NF 1 And I'm still here.
Doing exercises or gym can beneficial for it
I had it as long as I can remember
I have NF 1 (first in the family to have it) ,I'm 22 and I've been using a mobility cane for balance for 3 years now.
I have also this ,what is the treatment
Same here im the only one with nf1
Give me any mobile no. Send
I've had NF1 since I was a baby my sister has it my father had it . But neither of my grandparents had it. Mine are sometimes painful. But I cope pretty well NF1.
"Living with NF1 presents challenges, but with resilience and support, managing symptoms becomes more manageable."
i was diagnosed when i was 9 and i’m 14 now
Same for you .I was diagnosed,when 9 and 20 now
Any learning disabilities u had . Or bine fracture or hear loss
Do you still have neurofibromas?
@@hasna285 do you still suffer from nuerofibroma?
@@anuraj2521 hear loss
What doctor specializes in NF
NF1 mine are in orbital area and brown spots on skin
Wow
Very nice explanation and illustrations. I feel sorry for the patient even if he is not real. He looks so sad and sick.
Please Telugu translation mee
Hello. I'm from Indonesia, how much money to operate in ths cases..?
In my country is a rare desease therfore all cure, operation and chrckup are free of cost
i have a schwannoma i have done a FNAC and the result is below :
Clinical Details : measuring 3x3 slight tender swelling
Report : Smears show sheets of spindle cells in clusters and dispersed individually. Individual cells are spindle to oval with hyperchromatic nuclei. In addition fibromyxoid seen
Features are those of a spindle cell lesion favoring schwannoma
Advised : Excision Biopsy
please suggest me what should i do
Por ahora no hay cura, que no te toquen, no tomes ningún medicamento no vayas de médico en médico, solo cirujía para extirparlo de raíz. Te lo aseguro. Has una vida normal, ten tu tiempo ocupado.
My dad has been suffering from this since his low to mid 20's.
We were basically room mates. Idk much about him and his mind. But I know he didn't have it (showing) in his pictures from his Navy days.
But he's had it my whole life.
It's sad how little known it is.
(Selfish thinking at the time)
Kids from school would always ask "what are those bumps all over him? Is it herpes"
I was ashamed for people to see my dad...
Haven't lived with him since age 13. So I was young and dumb.
I am in the trial program for Koselugo in adults with plexiform tumors
How is it going? I have nf1 and I’ve been noticing some new spots lately.
How it's gng on? Pls...... reply
@@deepap3499 I am doing okay. I need to post a video on how I am doing . Diarrhea and very dry skin. Stay out of the sun, you will burn easily.
@@cw92212 Im hanging in here, trying to Stay Strong
@@unclebobsnfjourney7605 how is it now
I was diagnosed at 12 . I am 56 now and have been experiencing bad pains 😫 lately. Anyone one else being treated 4 pain?
yes, which medicine did you use? I use Koselugo
I got gabapentin lately cause of a few new tumor pains. It's helps a bit.
@@sexual0unicorn I used that too for me it helps sometimes. I also take Tizanidine which helps, but it relax the muscles which makes you sleepy
Does taking black seed oil daily help at all?
I have the tumors all through my body I have a thousand in my back very painful I've been getting treatments for the pain pain clinic shots in my back and painkillers
I’ve had it since I was little. I was born with the spots and diagnosed with the neurofibromas at age 3 or 3 and a half. I hate it. 😖😣.
Present how is ur health my baby have this neuro fibro mas
@@srinualajangi2705 creep do NOT CALL ME BABY!!!!!!!!
@@Ilovemyidol-ns9dq She said her baby have this condition and was asking how is your present condition
@@jijo666 What?
I have it. I've done surgery 3 times and i have to to go for another one very soon. If it not clean property during surgery and if a little bit fat remain then it started growing Again and you have to cut the same place again. Its painful.
I've only had surgery once 15 years ago, but finally going back to get 2 large ones (size of a ping pong ball) and a dozen or so small ones (pea size). Because my last surgery wasn't done correctly so hopefully this new doctor will do it correctly. Also hard to find NF specialist that are close to me.
I wonder if placing 500ppm colloidal silver in the surgical spots would help.
I have this and it’s not fun it’s struggle everyday for learning,understanding things right away, etc…
Sorry about the condition. I Hope you get better
@@MedicalCentric thank you!! ❤️
When did you find out?
@@dajuggernaut2099 umm I think I was in 2nd grade but I’m not sure my mom knows tho
@@gymnastlover1646 Thanks for sharing. Just had someone close get diagnosed with it. Just want to know what's ahead
I’m from Australia I have NF1
I have nf1, so painful
Nf1
Affect on
Height & Health Growth
Ye aage chal koi paresani hogi kiya
Only Light brown spots hai
what's your age
My promotoses nf2
i was diagnosed at 4, 18 now and still strugging with pain
Sorry about the experiences, Wishing you the best with your treatments.
Really
Same problem here
@Shanzith Salih yep I started complaining about very bad back pain at 5 years old (maybe even before but I don't remember) at around 12-13 I was diagnosed with Scoliosis and had surgery and they said it would fix my back pain, me 18 now still has the same back pain, I know that back pain was not caused by Scoliosis since I had the pain since way before but yeah still don't know what's causing it im just accepting it to be chronic pain now
Any treatment for nf1
Treatment can help but there’s no cure (yet)
@@gymnastlover1646 which treatment?? It can reduce my toumor
@@lina-zm8bf I think it’s to help with like the disability part not the tumors
Any ayurvadik treatment for this
99% of the ayurveedik treatments don't actually work. this is a genetic problem so there is no cure but I think regular checkups from differently specialized doctors can help those with this condition
I’m in that vid
Halo
I’ve had multiple surgeries for this and take Ibuprofen or Tylenol when the pain is unbearable.
Is recurrency occurs after surgery?
@@uvaissiddiqui3806 I have several up and down my spine, some else where and hundreds in/on my brain. That is why I take those.
I am suffering from this, will go and remove it soon
Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. It's important to consult with a healthcare professional to discuss your specific situation and receive appropriate guidance. Treatment options for neurofibromatosis may vary depending on the severity of symptoms, the location of tumors, and individual health factors. Surgery is sometimes considered to remove tumors, but the decision should be made in consultation with your healthcare team. They can provide the most accurate information based on your medical history and current condition.
Saya memilikinya sejak kecil sudah berobat tapi tidak ada hasil sudah di operasi malah tumbuh lagi. Lagi pula di indonesia masih jarang rumah sakit yg ada pengobatan penyakit NF1.lg pula terbentur biaya yg mahal.
Sama saya juga memiliki penyakit seperti ni.. 😥
Kak bisa sharing gmna awal penyakit nya? Anak saya nmr 2 byk bercak coklat di badannya, umutnya msh 1 bulan, awalnya saya kira tanda lahir tp lama kelamaan brtambah. Saya search d google katanya tanda NF 1. Udh k DSA tp dokter blm kasih diagnosa, baru dblg alergi. Tp udh d kasih salep ga ada perubahan malah bertambah.
Saya didiagnosis NF1. Ingin coba operasi salah satu tumot tapi masih bingung baiknya ke dokter apa. Udah coba ke onkolog tapi dokternya tidak bantak menjelaskan
I have nerve damage my body vibrates always in pain
Me too
I have and I is 14 years old
Sorry about that. I hope you get better soon
me to
@@MedicalCentric can u tell me what kind off taste should I have for me to find out pls
What is the cure?
Kindly visit a hospital for better treatment
@@MedicalCentric in which country are you
Cut it off your self ;)
@@Shadmannnn that's the cure for looks
My little brother is 9 years old and he has this disease. Do all those who get it have tumors and learning difficulties? I am very worried about him. I think about him all the time.
Hi i have this and live a completely normal life. I do have a couple small tumors but they mostly only hurt when touched. And im not sure if all people with tumors have learning difficulties but a lot do. Does your brother see a neurologist? Is it type 1 or 2?
@@hungrycactus1087 Is it contagious??like spread through skin to skin contact.
@@vigneshs4714 nope, not at all.
@@hungrycactus1087
I don’t know which type it is but I think it’s the first type .
Do the dark spots turned into lumps on your skin ?
But the doctors told us be careful because any fractures would happen to his bone it will not be heal
@@asmaaidham3534 they have not turned into lumps they’re just sensitive for me.
I'm the only one in my family who has it . And I have three other siblings who don't have it
NF is really painful to live with I over a thousand tumors in my back very very painful
I'm truly sorry to hear that you're experiencing such significant pain due to neurofibromatosis. Living with over a thousand tumors in your back can undoubtedly be challenging both physically and emotionally. It's important to work closely with your healthcare team to manage your pain effectively. They may explore various treatment options, including medications, physical therapy, or other interventions tailored to your specific situation. Additionally, seeking support from friends, family, or support groups for individuals with neurofibromatosis can provide valuable emotional support. Remember that ongoing research is being conducted, and advancements in understanding and managing neurofibromatosis may offer hope for improved treatments in the future.
Can't you have them surgical treatments to help you. Good luck I hope a cure is soon with the stem cell Research.
I'm from India I have NF1 My child Baby diagnosed Moya Moya Disease 😢😢😢 so sad god is not great
Any treatment for neurofibroma I am very tense I filled very bad please reply me and help me
Do things like ingesting Black Seed Oil daily help?
I'm also suffering for nf1
@Henry Lucas herable medicine cure ur lump
@Henry Lucas can u tell me the name of medicine
@Henry Lucas please help me. Share their video link
Beheth theyenawada me ledeta
I had three surgery’s on my leg and I have this 😒😔now I need a nother surgery!!!
What is the total cost of surgery? And after operation is it become other places??
It’s about 20,000$ and easily they come back in different places
Hello sir mughe bhi neurofibroma h iska ilaz nhi h kya pure sikn or brain
Hi pooja ji ek jagah hai treatment me bhi kra raha hu
@@shubhendrabhatnagar8050kaha treatment kar rahu app
Please post video about Priapism 🙄
Telugu translation me
Eska koe ilaj nae h? Esky sath e zandagi guzani parti h? Ya theek hoskta h ya nahi? Plz tel
هلأ وجظ علاج إناء مريذ باهشي
No
Nhii😔
Is it contagious??like spread through skin to skin contact.
No because it’s genetic disorder
No it isnt, its a genetic condition
It can be cure or not
It cannot be cured
@@AboutthatMommyLifewhy
@@meianandann2713 i Don’t know.
@@meianandann2713 rather a better answer is there no known cure for NF. Why? They have not found one.
@@AboutthatMommyLife thanks for the reply bcz I too affected of this neurofib
May I know if any medicine has been tried in the world to control or cure this disease? Can I hope for a cure? Can you hope for a medicine?
Neurofibromatosis (NF) is a genetic disorder, and currently, there is no cure for it. Treatment typically focuses on managing symptoms and addressing complications that may arise. Various medications and therapies may be used to manage pain, control symptoms, and address specific issues related to NF. While ongoing research is being conducted to better understand NF and develop potential treatments, it's essential to consult with healthcare professionals for the latest information on available management strategies and any advancements in the field. Hope for a cure or more effective treatments is driven by ongoing scientific research and medical advancements in the future.
@@MedicalCentric Is the world trying to find a cure or medicine for me? 20 years old, I was diagnosed with this disease 6 months ago.🥺
Recently Harvard Medicine is looking into using Mifepristone, a drug currently FDA-approved for chemical abortion to kill the tumor cells.
@@performingartsphotography8783 neurofibromas type 1?
It leads to death?
no... unless if it turns cancer for one of the tumors
Nf1 patients have a higher risk of developing cancer, or getting mpnst. So a very slim chance of that
Living leads to death.🙄
Guys I am 28 years old , my family history maybe positive for NF 1 , I have cafe audit spot on my body , one spot. Will I develop neurofibromas.? And if I develop will it be diffuse or localized pr plexifrom?
My mom has it I am 31 now feeling it
Any treatment for NF1
Geans can trun on and off at anytime
if i go blind its over
I’m 35 I have this it’s awful I hurt so bad all the time only thing that helps the pain is weed
To it help them from growing
ayo i have this ✋🏻
Me as well
Me too. 😖😣. Type 1.
Me too
I hope i die soon
I have neurofibrom 🥺
You're not alone, I also have it
😥😥😥 my😥😥😥
@@theblueshanobi ja 🥺🤲💖
I have too
@@sithusithu1701 is it very dangerous????
Specify the goal and need money
I have NF1 it get worse as you get older.
Sir pls malayalam tell me
നിങ്ങൾക്ക് ഈ പ്രശ്നം ഉണ്ടോ.?
Und
Enik ee problems und😭😭😭😭
@@sithusithu1701 instagram indo
@@sithusithu1701 place eadayaa
There is no treatment for neurofibromatosis
I think what you mean is there is no cure. There is however some amazing therapies out there that mitigate the growth of NF2 tumors.
Neurofibroma treatment tablet imatinib tablet
No treatment
I have this and i want to die😮
I'm sorry about your condition, But please stay positive, It gets better
@@MedicalCentricit gets worse over time
Stem cell Research is breaking ground. Look into it please. Look catholic or not try Blessed Holy Water From Loudes France. Where Our Lady Mother of God Appears. The Miracle Spring. Look Into It Praying for you.