Marissa- A Face of NF

Hi! I was diagnosed with neurofibromatosis type 1 when I was 3 years old.  I am the only one in my family that has it. I’ve had two major surgeries, countless appointments, MRIs, horrible headaches, and struggles with schoolwork and friendships…all from having NF. It sucks, but it will not define me and it will not prevent me from living my life!

-Marissa

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Recent Posts

  • Nothing to Fear: A Children’s Book on NF

    For young children with neurofibromatosis, medical appointments can feel big, unfamiliar, and sometimes scary. An eye exam, an MRI, a doctor’s visit, or even the mention of a needle can bring up questions that are hard for a small child to understand — especially between the ages of 3 and 7, when imagination is strong... Read More
  • NF Awareness Month Reached Across Our Six-State Region 

    Thank you to everyone who helped raise awareness for neurofibromatosis (NF) during May!  This year, NF Midwest families and advocates helped bring NF Awareness Month into communities across our six-state region. Through state and local proclamations, more people had the opportunity to learn about neurofibromatosis and recognize the families who live with NF every day. ... Read More

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