Thank you for your comment. It is very important for patients to have accurate information regarding this condition in order to get to the correct treatment. All the best.
I’m 18, my doctor told me I have a mild condition majority of them grow on my back, but I haven’t had any new ones this past year... none of them hurt when I push on them. Does that mean I can get the remove I hate them.
I’ve also got type 1 I’ve had 3 removed so far, and got quite a few more on my body. There’s one on my lower back that’s about the size of a quarter, that hurts if I put pressure on it. But with a sensitive back it would be difficult for me to get it removed with out jumping.
Thanks for your comment. We will be happy to assist you with removing any painful tumors. Please contact us at coordinator@drpanossian.com if you would like to proceed with a consultation.
I also have neurofibromas type 1. I was diagnosed about 6 months ago and I have about 19 cysts in my body. I am 20 years old. I think it's going to fade away, I want to know about this. Whether there is a cure or cure. Are the ones that have been removed coming?
I have something on my chest for years now. it’s a hyperpigmented patch with the nodule like pimples on top . Lab results says it may include neurofibromas
NF lesions are very specific and rarely solitary in adulthood. Removing the nodule and sending it to a pathologist for analysis is what we do in our practice to confirm the diagnosis. Hope this helps!
I have nf1 and I have the freckles in a 100% of my Body and many tumors and fibromas I only wish Honduras had some like You Doc specialist in neurofibratosis
I just want to put out there that I believe there is chemotherapy that can help. I think it was a study when I was young, to see if it could help relieve nf symptoms. Recently my family and I found out the study was a huge success. It may have to be given, or is best when young, but I’m not sure about that part.
If you are able to travel to the United States for your treatment, we will be happy to assist you. Please send us a request to coordinator@drpanossian.com.
Thanks for your comment. NF awareness must occur consistently if NF patients are to gain the proper support in everything from government support to research. Making more people aware about this condition requires using many proven strategies, including videos, in this Internet era. I hope you continue to check back to this channel for more educational videos on NF and other conditions.
As of now, it is not possible to edit a single site on a chromosome to its normal version. In NF, there is a single point of mutation on the involved chromosome. The mutation cannot be removed or deleted purely. Harming the remaining chromosome is likely to produce problems incompatible with life.
Give our office a call for a consultation. We also offer Skype consults if you are located outside of the greater Los Angeles area. You can go to DrPanossian.com to send us a contact request.
It is because she has nf like I do I suffer from anxiety and and I get upset easily so I am going to go on tablets for it be patient with her Darl because it is not her fault I know it is alright for me to say but be there for her👍
Thanks for the question. Learning disability or cognitive impairment refers to trouble that some people with NF have with learning new concepts or skills. This does not mean they are necessarily impaired. It means that they may have a harder time understanding new ideas as one would acquire while at school or new job skills, for example.
I have a mild case as well. Not very many neurofibromas.. I also had brain surgery in September which was benign. They are thinking it came from the NF1 stuff
Hi, I have NF1 and this is one of the best explanations I have found. Many thanks for sharing your knowledge.
I got nf 1 and I have to say your explication is very clear and complete! congratulation !
Thank you for your comment. It is very important for patients to have accurate information regarding this condition in order to get to the correct treatment. All the best.
I have NF 1 and have been a lbk amputee since 1975.....I have been on seizure meds for 14 years.
I’m 18, my doctor told me I have a mild condition majority of them grow on my back, but I haven’t had any new ones this past year... none of them hurt when I push on them. Does that mean I can get the remove I hate them.
I’ve also got type 1 I’ve had 3 removed so far, and got quite a few more on my body. There’s one on my lower back that’s about the size of a quarter, that hurts if I put pressure on it. But with a sensitive back it would be difficult for me to get it removed with out jumping.
Thanks for your comment. We will be happy to assist you with removing any painful tumors. Please contact us at coordinator@drpanossian.com if you would like to proceed with a consultation.
I also have neurofibromas type 1. I was diagnosed about 6 months ago and I have about 19 cysts in my body. I am 20 years old. I think it's going to fade away, I want to know about this. Whether there is a cure or cure. Are the ones that have been removed coming?
I have something on my chest for years now. it’s a hyperpigmented patch with the nodule like pimples on top . Lab results says it may include neurofibromas
NF lesions are very specific and rarely solitary in adulthood. Removing the nodule and sending it to a pathologist for analysis is what we do in our practice to confirm the diagnosis. Hope this helps!
Hello sir I have neurofibromatosis tumer on whole nurvs could help plz
Hey Sir I am india same problem neurofibroma starting stage any Madison sir
I have neurofibromatosis on both legs
One of these days I like to get them removed tumors
I have nf1 and I have the freckles in a 100% of my Body and many tumors and fibromas I only wish Honduras had some like You Doc specialist in neurofibratosis
I just want to put out there that I believe there is chemotherapy that can help. I think it was a study when I was young, to see if it could help relieve nf symptoms. Recently my family and I found out the study was a huge success. It may have to be given, or is best when young, but I’m not sure about that part.
I have recently diagnosed but I have weak eyesight since 6 years I am scared I will lose my eyesight
I have type one
i have nf1 having the electro surgery in a few weeks
how did it go? how much does it cost?
Please let me know how you got on cos I would like all my tumors gone
My Newrofribama problem any titmant please sir help me please 😭
Can we hope for a medicine to cure the disease?
Hello sir .how to clear it padmimi .I am from trichy Tamil Nadu India . Please give some trips to me sir.i am suffering this nerofibro matrix
If you are able to travel to the United States for your treatment, we will be happy to assist you. Please send us a request to coordinator@drpanossian.com.
Last year there was basically no video on NF but now there are so many why
Thanks for your comment. NF awareness must occur consistently if NF patients are to gain the proper support in everything from government support to research. Making more people aware about this condition requires using many proven strategies, including videos, in this Internet era. I hope you continue to check back to this channel for more educational videos on NF and other conditions.
how can i treat on this please help
Can we then edit gene and remove it ? , so it's a complete no to have kids if you have nf
As of now, it is not possible to edit a single site on a chromosome to its normal version. In NF, there is a single point of mutation on the involved chromosome. The mutation cannot be removed or deleted purely. Harming the remaining chromosome is likely to produce problems incompatible with life.
my wife has NF1 and is becoming depressed lately. i would love to get this treatment for her.
Give our office a call for a consultation. We also offer Skype consults if you are located outside of the greater Los Angeles area. You can go to DrPanossian.com to send us a contact request.
thanks for the reply. I am in Vancouver, Canada. I will be in touch
I wanted to be a
Model they laughed is there in one in mia
It is because she has nf like I do I suffer from anxiety and and I get upset easily so I am going to go on tablets for it be patient with her Darl because it is not her fault I know it is alright for me to say but be there for her👍
Hello doctor what do you mean by learning disability? They can’t learn ? Please I need an answer?
Thanks for the question. Learning disability or cognitive impairment refers to trouble that some people with NF have with learning new concepts or skills. This does not mean they are necessarily impaired. It means that they may have a harder time understanding new ideas as one would acquire while at school or new job skills, for example.
I have neurofibromatosis it is very mild i got the cafe au lait spots only on half of my hands and on my back and stomach thats it
I have a mild case as well. Not very many neurofibromas.. I also had brain surgery in September which was benign. They are thinking it came from the NF1 stuff
I have it too
I have the same thing as u to
I have NF 1, I believe I'm first generation as I do not know anyone in my family that has it
divafroggy same I'm first generation
Hello Dr iam a nerofibra pacenet
I know I have nf1 and I'm only 13
Plz sir sent mail I'd sir I need help me sir I'm nirofibrom pesaent
Neurofibromates sex other human plz plz reply
My Newrofribama problem any titmant please sir help me please 😭