Guidelines for NF1 Patients

NYU Langone pediatric neurologist Kaleb Yohay discusses NF 1 Guidelines.

[Ke-qvmd]

A good talk as an older adult it is very tough to find a Dr who treats NF1 especially Mt. I know kids are important but adult's have issues also. Having really never been treated for NF and never really been totally evaluated by a NF professional. I have eye issues having had detached retina and cataract on both eyes. I have had 5 eye surgeries in two years and still can't see good. Do not have optic glinoma though. But my left eye aches all the time especially when my head is down. Feels like I have a stitch in it and someone is trying to yank it out. I have a larger tumor on my brow. Have a smaller one on right eye but it not painful like my left. Also have tumors in my left ear canal that have been removed twice and have grown back. I have loss of feeling on the left side of face and left side of nose. This started about 4 to 5 years ago. I have one on my right leg that has grown about triple in size over last 10 years don't know if is from that or arthritis but it hurts all day long and has gotten hard to touch. But living in Mt I just have to buck it up and deal with pain and discomfort. It is hard to be in mild to moderate pain everyday. Luckily I have a high pain threshold. But it scares me the changes I am having. A lot of what you said in the talk I have and it is getting worse. Do you know any NF Drs in Mt?

[priyankagovekar]

I have already done my amputation surgery. Now have developed small bumps over my body. Now can I further take care of.

[arnabbiswas]

My Newrofribama problem titmant please. Please help me Dr

[trunumsaeed]

I am also patience of neurofaibromototes

[jfarias]

I have plexiform NF1 the most painful one is on my sacrum and goes into my pelvis and hip. I have a total of 11 tumors there all located nerves. I have seen 8 surgeons in Washington state and not 1 wants to take my case due to the tumors is way to complicated to be removed. I have to be on high dose of pain medication 24/7

[ToroTechie]

As a 16 year old, I am diagnosed with NF1 and I really don't know what to do. Day by day I get more and more scared

[spyrogirlkim]

We have no doctors in Kansas that know much about NF. I have taught my doctor about it.

[jedi]

I'm 47 and was diagnosed with nf1 12 months ago

[Chirpingcherub]

11:19 and 11:21 could someone explain the graphs appear to contract each other (frost graph cancer risk increases with age and is much higher than general population in old age) however The second graph shows that the cancer risk isn’t much different from general population after age 70. Could you explain this thanks

[Justathought]

I'm 41 and I have NF, I played sports as a kid and young adult fought and was a dumb kid who did dumb shit, I have only broke 1 bone playing football at 12 y/o and that was my coller bone. I wish I knew about the vit d sooner I am now taking vit d vits, pain inmy hands only happen with the weather. I do have HB and trying to lower it. this was interesting cause this is more info on NF then I ever had as a child. my sister also has NF although hers is much wors than mine same with my mother. and I worked with a guy who had the visable bumbs and I asked him if he had NF and he did it was nice to see someone else who has the same condition that I have, I'm lucky I dont have the bumps on my body.