Story of NF: Shaborah B

I was diagnosed with NF1 at birth, and I was 3 years old when I developed an optic glioma in my right eye. I had many surgeries growing up to debulk the tumor in my eye. Growing up with NF1 has been difficult; there have been adult bullies and child bullies who have made me feel bad about myself for having this condition. It was difficult coping with bullying from teachers and students while trying to learn in school with a learning disability and my facial differences.

As an adult, I've suffered through adult bullies both in the workplace and random strangers who like to yell out hurtful things, people thinking I'm dangerous or someone to be afraid of, avoided, and often stared at. Sometimes, this condition makes me tired more quickly than others, or I need to rest more because physically I am in so much pain. Two more tumors were discovered in my brain recently, and they are being monitored. Thankfully, none of my tumors were cancerous. Sometimes, I have trouble with my speech impediment, learning disabilities, chronic pain, depression, and anxiety. However, most of my anxiety comes from being in social situations because people can be curious, and some people can be cruel. NF has impacted my confidence and impacts my social life. I try to push through the negativity and remind myself that I am fearfully and wonderfully made.

I am thankful for my family and friends, who have given me the strength to keep going and push through all the negativity that comes with people who are different in this world. I thank God for giving me my life, family, and friends. I am thankful for continuing my education and getting my Bachelor's in psychology with a minor in criminal justice, and getting a job where I can give back to my community.

The gift NF1 has given me is to not give up on yourself and your dreams. NF1 has given me the drive to fight and the compassion to see and accept others for who they are. We are all different, and some of us just stand out even more differently among the different. My wish and hope is to have people be accepting of others' differences. I don't like to say "deformity" because I feel like that term has a negative connotation when people think of it. I like to say my face is beautiful just as it is facially different.

My love for supporting my community is not only in my work but also in my everyday life.