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Stories of NF: Katie P.

By February 6, 2020December 5th, 2023NF1, Story of NF

I was diagnosed with NF1 at 8 years old. I am very fortunate. I have been able to live a somewhat normal life up to this point. I do have a 15cm x 6cm plexiform tumor in my hip and multiple smaller neurofibromas on my trunk, which, cosmetically, is difficult in the summer. I have a husband and two daughters, one of whom was born with NF.

I stay brave and strong for my daughters. My tumors are noticeable, but I do not allow my daughters to see my frustration or sadness with them. I am so much stronger than my tumors. I teach them that it is okay to be different… That it is okay to look different. My daughters keep me motivated, and sometimes slightly exhausted on a day-to-day basis. I have run the Cupids Undie Run five years in a row to share with friends and family what a day in the life of living with NF is like. My youngest daughter was recently diagnosed with NF1 as well, so I know that staying brave on her journey is going to be equally as important.

I work for a financial firm in their HR department. I like to tell people I wear many hats and that there is no task I am not willing to do or try.

I plan to live each day as if I didn’t have NF. I try to not let fear of living with NF impact my day to day life.

My biggest passion (outside my family and friends) is running. I have run over a dozen half marathons and most recently the Boston Marathon (with Boston Children’s Hospital) and the Chicago Marathon. I was able to cut eight minutes off my mile time in Chicago, finishing in 4 hours and 18 minutes, a pretty big deal considering my doctors growing up said I would not be able to participate in sports due to my scoliosis! If they could see me now!


Just be.

Dream vacation
An over-water bungalow in Tahiti

Besides cure NF and make tumors disappear…
either invisibility or the ability to run super fast!