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
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma
Read MoreEllen’s Story
Read Ellen's story, how she recovered from 'radical surgery' and why she's raising funds for NTUK.
Read MoreCelebrating Trustees Week
It's National Trustee Week: Meet the people who keep NTUK moving.
Read MoreMen’s Health Month
We're making sure that men with NF are prioritising their health, both in and out of the workplace.
Read MoreIrfan’s Story
Irfan discusses his NF journey, how he transformed uncertainty and isolation into community and understanding.
Read MoreKelly’s Story
Find out how Kelly discovered her confidence after overcoming testing years at school and college.
Read MoreAwareness Walks
Raise awareness with an organised walk within your community. We've put together some pointers to help you with planning.
Read MoreMeena’s Awareness Raising Coastal Walk
NTUK trustee Prof. Meena Upadhyaya treks the Welsh coast to raise awareness of NF and rare diseases.
Read MoreBreast Cancer in Neurofibromatosis Type 1
Professor Gareth Evans takes us through a summary of the current research around the links between NF1 and breast cancer
Read More