Stories of NF: Ruta

Sep 11, 2018, Posted in NF Hero

I was 17 years old when I began feeling pain in my leg. I was feeling so much pain that I had to take painkillers every day and get massages from my friend. After two years in pain, I reached out to my doctors and told them what was happening. They did an MRI and found a schwanomma in my back. Then I told them that I was not hearing well out of one ear, so they did one more MRI of my head. The diagnosis came fast: I had NF2.  It did not break me, but my family was devastated. I was the strong one, the one who always believed I will never lose anything. I did not want to let this disease change anything in my life, but now it has changed a lot.


Stories of NF: Luke B.

Sep 4, 2018, Posted in NF Hero

I was diagnosed with NF1 when I was 3 months old. When I was 3 years old, I had to get a right renal artery stenosis repair. It was so bad, I was the youngest patient they ever worked on. They wanted to wait until I was 5, but I would've died if they did.


Marine Corps Marathon: A Conversation with NFE Athlete April Setterlund

Aug 24, 2018, Posted in Fundraiser, NF Endurance, NF Hero

April Setterlund ran the Marine Corp Marathon last year, along with her mother and sister. They did so for her nephew, Nathan, who was diagnosed with NF in 2016. These three women trained and ran the marathon as a tribute to his strength and the strength of all those living their best life with NF. We asked April to share a little more about her experience running the Marine Corp Marathon.


Stories of NF: Barry L.

Jul 2, 2018, Posted in NF Hero, NF1

I am 66 years old. I have NF1 and it causes bouts of depression, but I deal with that. I am a fortunate man. I taught school for 35 years having earned my Bachelor’s and Master’s degrees. I am married with no children.


Learning to Love Myself

Jun 18, 2018, Posted in NF Hero, NF1

By Cristina Kline

“Cyclopes, one-eyed monster, Hunchback of Notre Dame!”

These are a few names I would hear throughout my school-age years. Kids can be mean, but being a kid myself at that time I didn’t understand. I played it tough. I pretended it didn’t bother me. I was strong. Those were just words but you know what? Words hurt. I’d cry in secret when nobody was watching. I wouldn’t tell my friends or family what I was going through and how it affected me. I had to be strong for them. I knew if I told my family they would suffer too. So, I kept it to myself. I kept it to myself for many years.

I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was two years old. I am now 31 years old.

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