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
The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
Read MoreAppearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
Read MoreJane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
Read MoreSarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
Read MoreLaura’s Story
Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:
Read MoreVisible Difference Equality Law Research: summary of findings
Find out more about the results here:
Read MoreThe Galloway Family and their “amazing” four year old Ruby
Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.
Read More“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
Read MoreA Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
Read More