Katie’s Story
08 July 2020
My name is Katie Kobzeff, 33, and born and raised in Orange County, California.
When I was 4 years old, I remember being in the Doctor office and hearing my Mom screaming in the other room. Next thing I know I’m being shoved into a MRI machine being told not to move at all. At first, they thought I had a cancerous tumor but thank God, I was diagnosed with Plexiform Neurofibromas in my left nose and cheek.
I have had over 22 surgeries on face. I have to get surgery every 1-2 years on my nose to de-bulk the tumor so I can breathe and cosmetic reasons. Growing up with a tumor on my face is something I can not hide.

Yes, it sucks after I have surgeries and a million people ask me what happened, or tell me that I have dirt on my face when it’s the scar line. I try not to have it bring me down but share my story instead by running marathons. I have ran over 49 marathons! 12 fulls & 37 half’s and I have raised over $20k for various children’s tumor foundations over the years!


I have ran all over the country and even tested @nike.__shoes before they hit the store! I ran for Nike for 6 years! Running is a way for me to get through my problems and all the surgeries I’ve had to deal with! I feel blessed that I just have the 1 tumor and not multiple and I just want to share my story and let you know you are not alone and I’m trying to be brave by sharing my story!
Filter News

Support Specialists Challenges and Ambitions
Read more on both Rachel and Carolyn's views on their ambitions and challenges faced as Support Specialists
Read More
Runderpants Bangor 2019
Have a read about the unqiue but extremely successful event that was Runderpants Bangor 2019
Read More
Nerve Tumours UK joins up with Face Equality International’s Alliance
We have joined Face Equality International Alliance in an attempt to end discrimination to those with facial differences
Read More
Bronte’s Story
Have a read of Bronte's story about how she continues to enjoy living her incredibly adventorous and ambitous life
Read More
Adam Buxton Comedy Night in aid of Nerve Tumours UK
Our charity comedy night was certainly nothing short of a success. Find out exactly what went down here:
Read More
Meet Megan
Megan Crews is a 30 year-old special needs tutor in Salisbury. She recently spoke out in The Sun.
Read More
How does your visible difference affect you?
Researchers would love to understand your experience of how a visible difference affects your daily life
Read More
Gabriella’s Story
"I believe everyone should think the same and be kind to people however they look and whatever condition they have."
Read More