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Stories of NF: Alexandra S.

By April 19, 2021February 1st, 2024NF2-SWN, Story of NF

I was diagnosed with neurofibromatosis type 2 (NF2) in November 2009 at age 35. I was utterly shocked. I had three young children, ages 6, 3, and 2. I had a strange combination of symptoms for years, but no doctor had ever made the connection to NF2, until my family doctor finally sent me for an MRI. Fortunately, I soon found the wonderful NF team at Johns Hopkins and I’ve been in their expert care ever since.

Even though I have what is considered a “milder” case, NF impacts my life every day. There are many things I cannot do anymore that I miss. I work part time but I don’t have the stamina of most people. I have to evaluate the impact of everything I do. This quote by author Laura Hildebrand sums up my feelings: “What I think about is a life in which I don’t have to monitor my body. A life in which I’m not constrained in terms of what I want to do and not paying a huge price for what I do.” I’m sure many fellow NF patients can relate to this feeling! However, over the years, I’ve tried to shift my thinking from focusing on what I cannot do to what I can do.

Having NF is tough, but it has given me gifts as well. Having a brain full of tumors tends to put things in perspective. I’ve been given the gift of truly realizing that nothing in life is guaranteed and NF teaches me daily not to “sweat the small stuff!” I think that it has also taught my kids to be more compassionate. They’ve witnessed me struggle and persevere through some very tough times. And a few years ago, when I was hospitalized followed by a very long recovery, my kids experienced how our community rallied to help our family. It’s an amazing and humbling feeling to be on the receiving end of that kind of loving support! There are no words to express my gratitude for that.

I am a librarian in a public library. One of my greatest joys is connecting a reader (especially a child) to a particular book and then having them come back to me and tell me they loved it! I believe that books can have a tremendous effect on people’s lives. I also love walking and hiking outside, especially in the forest. One of my favorite places is Acadia National Park in Maine. I am an avid baseball and hockey fan. (Go Nats! Go Caps!) I also love to research the concept of “Food as Medicine” and cooking healthy meals. My family is my greatest blessing. My kids are 17, 14, and 13 and they keep me very busy! 🙂 My husband Joe is the “rock” of our family and keeps me going through the ups and downs of life.



Radiate positivity!

Favorite song
“Keep your Head Up” by Andy Grammer. It’s a great upbeat reminder to keep on going!

The power to relieve suffering

My son John is a Boy Scout and in order to receive the highest rank of Eagle Scout, he had to plan and undertake a project to benefit others. Since I am a longtime patient at Johns Hopkins, John really wanted his project to benefit Hopkins patients. He was inspired by the excellent care I’ve received from Dr. Blakeley and her NF team over the past ten years. I was diagnosed with NF2 when John was 6 years old, so for most of his life he has been impacted by my disease.

In consultation with Tiffany Potterfield, a Child Life Specialist at the Hopkins Children’s Center, John decided to build and donate eight wooden baby doll cradles for the children’s playroom. Through his fundraising efforts he was also able to purchase eight multi-ethnic baby dolls to go in the cradles, and a play mat for the playroom floor. 

So I am proud to say that something so positive came out of my diagnosis. The kindness and care of my NF team inspired my son to donate this labor of love to the young patients at Hopkins.