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
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.
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.
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 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 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 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.
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.
@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
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.
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.
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
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!
@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.
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.
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?
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