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
RideLondon FreeCycle Sunday 29th May
Join Nerve Tumours UK on the official RideLondon Day 29th May 2022
Read MoreRAISING THE ROOF COMEDY NIGHT
First night on the NTUK 40 years Comedy Circuit 2022 at London's Backyard Comedy Club
Read MoreChloe’s NF1 story
Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong
Read More“Happy Easter”
A message from Karen, our Charity Director, wishing you a very Happy Easter!
Read MoreLisa helps Shine a Light on Neurofibromatosis in Belfast
Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May
Read MoreAlex’s NF1 story
Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications
Read MoreSumeeth’s Schwannoma story
Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis
Read MoreLaura’s NF1 story
Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1
Read MoreDisfigurement equality at work - research
This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements
Read More