Yes, no one knows about this disease. It is so frustrating. Even my own husband doesn’t want to believe that it is some kind of cancer. But at least thanks god it will not kill us. We all have to take one day at a time. I find it by keeping busy and stay active, I manage the symptoms better.

My biggest problem is people look at me and think nothing wrong with her she looks just fine I try to explain to him that it's rare and that I look great on the outside but I'm lousy on the inside most of them just give you a little tiny smile and say well good luck

Is Schwannomatosis NF3 a type of 'cancer' ? I also have Juvenile Myoclonic Epilepsy, which 'started' around the same time when I was 14 in 1970. I also now since June 2022 have Prostate Cancer.

I have Schwannomatosis NF3 and even some of the doctors scratch their heads , 'never heard of it!' finally diagnosed in 2017, symptoms started in 1970, but it interacts with so many other things medications and medical conditions. Even some medical students 'grill' me "What are your...." a real lab rat! I have my own personal specialist, but numerous times I feel it is the blind leading the blind, no one to compare symptoms etc.!