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 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
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 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
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.
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.
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.
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.
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.
@Bliss_717 Neurofibromatosis Type 1 (NF1) is a genetic disorder that causes tumors to grow on nerves. The bumps you’re referring to are likely neurofibromas, which are benign tumors. Here’s what you should know about their removal: 1. **Consult a Specialist**: It’s essential to consult with a dermatologist or a specialist in neurofibromatosis. They can provide a thorough evaluation of your condition. 2. **Surgical Removal**: Neurofibromas can be surgically removed, especially if they cause discomfort, pain, or cosmetic concerns. The decision to remove them depends on factors like their size, location, and whether they are affecting your quality of life. 3. **Monitor and Manage**: Regular monitoring is often recommended to check for changes in the neurofibromas. In some cases, they may not require immediate removal if they are not causing problems. 4. **Potential for Recurrence**: Even after removal, new neurofibromas may develop over time, as NF1 is a progressive condition. Discuss your concerns with your healthcare provider to develop a personalized plan for managing NF1 and deciding on the best approach for any neurofibromas.
Can neurofibromatosis lumps stop growing?? I mean not increasing in number, I have a lot of birthmarks on my face and body like freckles, this has been there since birth, I realized there was a lump like nf when I was in vocational school .. or 3 years ago, and it didn't cause pain, even my academics were very good, my parents didn't have this diagnosis .. ahh i hate more myself rn
@pgnkuliah It's understandable to feel frustrated, but it's important to remember that neurofibromatosis (NF) varies greatly in how it affects people. Some lumps may stop growing or remain stable over time, especially if they’re not causing pain or other issues. Regular check-ups with a healthcare provider can help monitor your condition. Your academic success shows your strength, so focus on what you can control and continue seeking support from medical professionals and loved ones.
@@MedicalCentric ahhh this makes me a little better, but will using lotion containing aha bha or arbutin make it worse?? Or hormones will make it worse isn't it??.. anyway thanks a lot!
@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
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.
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
Hi my Name is hari I was born with nf1 I have done 1 surgery and there is a treatment for nf1 the medicine is called “ipluse” I have been drinking that medicine since I was 10 now I’m 14 it’s real it’s used for anti-cancer it’s gonna help a lot to nf1 patients mainly drink 3L of water
Neurofibromatosis type 1 (NF1) is a genetic disorder characterized by the growth of benign tumors along nerves in the skin, brain, and other parts of the body. Treatment often involves managing symptoms, and medications like "Ipluse" may be used as part of therapy to target tumor growth, particularly with anti-cancer properties. Staying hydrated by drinking 3 liters of water daily is essential for overall health and can support the effectiveness of treatment. It's great to hear that you're managing your condition and staying positive, Hari.
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 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.
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.
@duddudevaraj859 Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow on nerves and can affect various parts of the body. Treatment focuses on managing symptoms and complications rather than curing the condition itself. This may include: 1. **Monitoring and Regular Check-ups**: Regular visits to healthcare providers to monitor the growth of tumors and manage any related issues. 2. **Surgical Intervention**: Surgery may be needed to remove tumors or address complications. 3. **Medication**: Medications may be prescribed to manage symptoms such as pain or other specific issues. 4. **Supportive Therapies**: Physical therapy, counseling, and other supportive measures can help with functional issues and overall quality of life. 5. **Genetic Counseling**: For those planning a family, genetic counseling can provide information and support. Consulting with a specialist, such as a neurologist or geneticist, can provide more personalized and detailed treatment options based on the type and severity of neurofibromatosis.
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?
Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue, which can lead to a range of complications, including skin changes, bone deformities, and neurological issues. Living with a chronic condition like this can feel overwhelming and exhausting, making it seem like there's "no rest for the wicked." It's important to find support, whether through medical care, support groups, or counseling, to help manage the physical and emotional challenges that come with the condition. Remember, taking care of yourself and seeking the right support can make a big difference in managing your health and well-being.
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.
NF2 here, I'm glad you represented the info well. Thank you ❤
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
Can we get any medical treatment in future for nf1. there is any possibility that we will recover from it
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
bro pls no, bro pls!
Thank you Very much Doctor I'm favourite your lecture
Great video! Thank you so much!
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 suffer from NF 1 And I'm still here.
What doctor specializes in NF
Thank you so much
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
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'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."
Tq doctor...🎉
your welcome !
@@MedicalCentric its my pleasure
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
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
Doing exercises or gym can beneficial for it
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.
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?
He was asking you your present health and was informing you that his baby also has it@@Ilovemyidol-ns9dq
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 had it as long as I can remember
Thanks
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
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 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
What happened to your tumors its shrinking or no?
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?
I’m from Australia I have NF1
Nice presentation
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
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 have nf1 plz tell me can we remove the bumps
@Bliss_717 Neurofibromatosis Type 1 (NF1) is a genetic disorder that causes tumors to grow on nerves. The bumps you’re referring to are likely neurofibromas, which are benign tumors. Here’s what you should know about their removal:
1. **Consult a Specialist**: It’s essential to consult with a dermatologist or a specialist in neurofibromatosis. They can provide a thorough evaluation of your condition.
2. **Surgical Removal**: Neurofibromas can be surgically removed, especially if they cause discomfort, pain, or cosmetic concerns. The decision to remove them depends on factors like their size, location, and whether they are affecting your quality of life.
3. **Monitor and Manage**: Regular monitoring is often recommended to check for changes in the neurofibromas. In some cases, they may not require immediate removal if they are not causing problems.
4. **Potential for Recurrence**: Even after removal, new neurofibromas may develop over time, as NF1 is a progressive condition.
Discuss your concerns with your healthcare provider to develop a personalized plan for managing NF1 and deciding on the best approach for any neurofibromas.
@@MedicalCentric oki sir thankyou you so much
Can neurofibromatosis lumps stop growing?? I mean not increasing in number, I have a lot of birthmarks on my face and body like freckles, this has been there since birth, I realized there was a lump like nf when I was in vocational school .. or 3 years ago, and it didn't cause pain, even my academics were very good, my parents didn't have this diagnosis .. ahh i hate more myself rn
@pgnkuliah It's understandable to feel frustrated, but it's important to remember that neurofibromatosis (NF) varies greatly in how it affects people. Some lumps may stop growing or remain stable over time, especially if they’re not causing pain or other issues. Regular check-ups with a healthcare provider can help monitor your condition. Your academic success shows your strength, so focus on what you can control and continue seeking support from medical professionals and loved ones.
@@MedicalCentric ahhh this makes me a little better, but will using lotion containing aha bha or arbutin make it worse?? Or hormones will make it worse isn't it??.. anyway thanks a lot!
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
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
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
Hi my Name is hari I was born with nf1 I have done 1 surgery and there is a treatment for nf1 the medicine is called “ipluse” I have been drinking that medicine since I was 10 now I’m 14 it’s real it’s used for anti-cancer it’s gonna help a lot to nf1 patients mainly drink 3L of water
Neurofibromatosis type 1 (NF1) is a genetic disorder characterized by the growth of benign tumors along nerves in the skin, brain, and other parts of the body. Treatment often involves managing symptoms, and medications like "Ipluse" may be used as part of therapy to target tumor growth, particularly with anti-cancer properties. Staying hydrated by drinking 3 liters of water daily is essential for overall health and can support the effectiveness of treatment. It's great to hear that you're managing your condition and staying positive, Hari.
I have nerve damage my body vibrates always in pain
Me too
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
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.
It can be cure or not
It cannot be cured
@@ItsMeCynthiaGwhy
@@meianandann2713 i Don’t know.
@@meianandann2713 rather a better answer is there no known cure for NF. Why? They have not found one.
@@ItsMeCynthiaG thanks for the reply bcz I too affected of this neurofib
NF1 mine are in orbital area and brown spots on skin
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.
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😔
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
Is it contagious??like spread through skin to skin contact.
No because it’s genetic disorder
No it isnt, its a genetic condition
Neurofimdrosis ki treatment untundha
@duddudevaraj859 Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow on nerves and can affect various parts of the body. Treatment focuses on managing symptoms and complications rather than curing the condition itself. This may include:
1. **Monitoring and Regular Check-ups**: Regular visits to healthcare providers to monitor the growth of tumors and manage any related issues.
2. **Surgical Intervention**: Surgery may be needed to remove tumors or address complications.
3. **Medication**: Medications may be prescribed to manage symptoms such as pain or other specific issues.
4. **Supportive Therapies**: Physical therapy, counseling, and other supportive measures can help with functional issues and overall quality of life.
5. **Genetic Counseling**: For those planning a family, genetic counseling can provide information and support.
Consulting with a specialist, such as a neurologist or geneticist, can provide more personalized and detailed treatment options based on the type and severity of neurofibromatosis.
I'm the only one in my family who has it . And I have three other siblings who don't have it
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
I have nf1, so painful
I'm from India I have NF1 My child Baby diagnosed Moya Moya Disease 😢😢😢 so sad god is not great
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
Wow
if i go blind its over
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
I’m in that vid
Halo
i guess no rest for the wicked then?
Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue, which can lead to a range of complications, including skin changes, bone deformities, and neurological issues. Living with a chronic condition like this can feel overwhelming and exhausting, making it seem like there's "no rest for the wicked." It's important to find support, whether through medical care, support groups, or counseling, to help manage the physical and emotional challenges that come with the condition. Remember, taking care of yourself and seeking the right support can make a big difference in managing your health and well-being.
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.
I have neurofibrom 🥺
You're not alone, I also have it
😥😥😥 my😥😥😥
@@theblueshanobi ja 🥺🤲💖
I have too
@@sithusithu1701 is it very dangerous????
ayo i have this ✋🏻
Me as well
Me too. 😖😣. Type 1.
Me too
I hope i die soon
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
Specify the goal and need money
I have NF1 it get worse as you get older.
Beheth theyenawada me ledeta
Neurofibroma treatment tablet imatinib tablet
No treatment
Sir pls malayalam tell me
നിങ്ങൾക്ക് ഈ പ്രശ്നം ഉണ്ടോ.?
Und
Enik ee problems und😭😭😭😭
@@sithusithu1701 instagram indo
@@sithusithu1701 place eadayaa
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.