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
Postponed: Medicine and Me: Living with Nerve Tumours at the Royal Society of Medicine
Postponed: Find out more about the event at the Medicine & Me event at the Royal Society of Medicine here:
Read MoreNF1 Teenager Support Day!
Bridie Windsor is a Deputy Clinical Nurse Specialist who has organised a support day for teenagers with NF1. Read more here:
Read MoreCallum Axford’s Story
Vote for Callum's nomination for Positive Role Model (Disability) in this years National Diversity Awards!!
Read MoreThe results are in for our Nerve Tumours UK film nominated at the Rare diseases film festival!
Check out our film & view the results from the film festival here:
Read MoreNoah’s Inspirational Fundraising Story
Noah Herniman, 14, raises over 1,000 Easter eggs for charity
Read More“Going dry in January” for NF
Janet Holloway and Val Goeghegan complete dry January for Nerve Tumours UK
Read MoreRunderpants Winchester 2020
Winchester Student Union RAG are taking on the Runderpants Mile, our unique fun run in your undies!
Read MoreA Magical Weekend
Blackpool Magic Convention 2020 supports Nerve Tumours UK this year as it's chosen charity
Read More