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
Nicks Triathlon in Support of his daughter Eilidh
Find out more about Nick's Triathlon and his daughter's experiences with NF1 here:
Read MoreTom GK- Hearing Loss: The Musical
Find out more about the musical and how you can secure your ticket here
Read MoreNerve Tumours UK joins the “Embracing Complexity” Coalition
Find out more about the coalition we have decided to join
Read MoreResearching NF1
Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.
Read MoreMegan’s Journey
Megan talks about her experiences of being a student with NF and what she took away from the NF conference in San Fransico
Read MoreAldo goes to Primary School
Find out more about the book aimed at helping people understand the life of an autistic boy going through primary school here
Read MoreEva’s Races
Eva has run 3 races over the past year for NTUK, find out what has been motivating her here:
Read MoreCarl’s Story in memory of his sister who had NF2
Carl recently hosted his own wrestling event in memory of his late sister, find out more on his story here:
Read More