Hi Kate, thank you for another informative video. (BTW, I sent a comment a couple of weeks or so ago about my daughter.) My mother-who was born in 1909-had NF1, as do I. My tumors are mostly on my chest and back, and while I have some itching around some of them now and then I have not had any pain. I have been very fortunate! My question is "What are the odds of a malignant tumor developing as I get older?"
most of time my lumps don't hurt, but there is pain some times, migraines and all. does make it hard to work. I have the spots to, like its brutal. it is sad that i can't seem to find a doctor for it. Mine Mutated but my PCP doesn't know about it. do you know where i can identify a neroufibroma?
@@thelonelyelephant Thanks, unfortunately there is only one doctor in my state that specializes in my condition. He or she does not normally treat adults either
Hi again - you can find out more at www.ctf.org, and learn more about treatments at www.ctf.org/mek You might also be interested in reaching out to our patient support coordinator with questions specific to you. Her email is kkelts@ctf.org
Hi Kate, thank you for another informative video. (BTW, I sent a comment a couple of weeks or so ago about my daughter.) My mother-who was born in 1909-had NF1, as do I. My tumors are mostly on my chest and back, and while I have some itching around some of them now and then I have not had any pain. I have been very fortunate! My question is "What are the odds of a malignant tumor developing as I get older?"
most of time my lumps don't hurt, but there is pain some times, migraines and all. does make it hard to work. I have the spots to, like its brutal. it is sad that i can't seem to find a doctor for it. Mine Mutated but my PCP doesn't know about it. do you know where i can identify a neroufibroma?
Teralcraft a dermatologist or neurologist will be able to help
@@thelonelyelephant Thanks, unfortunately there is only one doctor in my state that specializes in my condition. He or she does not normally treat adults either
Hi Kate,I have NF and I had undergone 4 surgeries,I am soo tired with everything,when will it stop growing back😥😥
I have
NF1 and I hate myself
I have NF1 too. Please try not to think that way....
@@MegaKurtus thanks
hlo kate...I am from India.My son has plexiform neurofibroma on his pelvis area size 8cm.approx.Any treatment for it?please reply.His age is 21 years.
Thanks for your comment. You can learn more at www.ctf.org/treatments
My Newrofribama problem titmant please help me madicin name
Hi again - you can find out more at www.ctf.org, and learn more about treatments at www.ctf.org/mek You might also be interested in reaching out to our patient support coordinator with questions specific to you. Her email is kkelts@ctf.org
Ciao, io sonoffro di NF1 e ne parlo anche nel mio canale