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Stories of NF: Dana K

By December 21, 2023February 28th, 2024Awareness, NF2-SWN, Story of NF

I was diagnosed (with NF2-related schwannomatosis) at 14 years old and had a really hard time fitting in as my hearing got worse. Not too long after I switched schools, I had to figure out how to fit in with people who already had friend groups. Almost everyone was really nice, but it is hard to fit in when everyone else is hearing. I decided I wasn’t going to let that interfere with my high school journey so I chose to own my NF2-SWN and be positive and not care what others thought.

Living with NF2-SWN has its up and downs for me. When I started high school, I told myself I was going to own it and not let my diagnosis get in the way of doing what I love to do. I graduated college with a degree in Graphic Production in 2020 during COVID. Between my brain surgeries and the pandemic, I found myself struggling to find jobs because there were minimal opportunities for deaf people with learning difficulties that can’t drive. I know I have to accept my limitations but am still hopeful for my future with the support of my family and NF support groups.

I have loved photography ever since I picked up my camera back in high school. I went to the Deaf and Hard of Hearing program at Rochester Institute of Technology and got a vocational degree in Graphic Production. I love to spend time with my family and our dog and am very excited to be in the process of getting a Hearing Service Dog.

This Story of NF was also published in the Winter 2023 edition of NF News.

A woman with long blonde hair standing in front of a wall.