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Stories of NF: Lindsay S.

By October 5, 2020February 5th, 2024NF2-SWN, Story of NF

When I was 21, I was involved in an accident that left me unconscious. I was brought to the emergency room and put into a CT scan. The doctor walked in and showed me a mass in the back of my brain and said it’s probably just a cyst but that an outpatient MRI was recommended. Two weeks later I went in for the MRI and it took five doctors reviewing my scans before they let me go home. Upon my arrival I was met by a neurologist, neuro-surgeon, ENT, and a genetic counselor. I watched as one of them started to write something on a yellow post-it note; he handed it to me and it read “Neurofibromatosis Type 2.” That little piece of paper changed the the entire direction of my life.

Trying to explain to my other 21-year-old friends what was happening to me was incredibly difficult and hard for them to understand (rightfully so). I felt extremely alone. I wanted so badly to be able to live a normal young-adult life like my friends. I decided to leave college in order to focus on my health and seek treatments that might be available to me.

In some ways this has been challenging, and in others It has shown me paths that I would have never walked that have changed my life for the better. In 2011, I met Dr. Chris Moertel, a neuro-ophthalmologist at the University of Minnesota Masonic Children’s Hospital who approved the drug Avastin for me. Dr. Moertel and his team gave me a chance and have gone out of their way to advocate for me since day one. These people are my heroes and are truly a second family to me. My quality of life and ultimately the devastating impact it would have had on me and my future is not lost on me.

Due to Avastin’s long term side effects however, I was told I would never be able to have children. This news was devastating to me, as I had dreamed of being a mother since I was little. So, in 2018, when I found out I was pregnant, I was elated (and shocked!) The human body is amazing in its ability to heal. Now one-year-old, my son Silas has brought so much joy and laughter to my life. I love spending time with our little family at the beach. Building sandcastles and swimming the day away. It is in those moments I am free from NF2.

It is so important to acknowledge your reality. I assign a time to myself to simply be sad, angry, or scared. I let myself rest and do nothing. It’s essential to allow yourself this space to feel. Once those assigned days are over, I always get right back up and move forward. No matter who you are there will always be days of emotional or physical pain, but remembering that brighter days are ahead can help keep you going. I would be lying if I didn’t say that NF2 has taken a great deal from me, but it can never take away my positive attitude, my life purpose, or my strength. These are the cards I was dealt, and every day that passes I am learning new and more creative ways to play them.

Lindsey’s Story of NF2 also appeared in the Fall 2020 issue of NF News.