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Stories of NF: Rachel S.

By May 7, 2018February 5th, 2024NF2-SWN, Story of NF

I was 16 when I began to have hearing issues. After getting my hearing tested, the results revealed profound hearing loss in my right ear. The hearing test lead to an MRI and then to my diagnosis of NF2.

For me, the physical pain that comes with NF pales in comparison to the mental weight the disease carries. Being diagnosed as a teenager really impacted my confidence. It caused me to think poorly about myself and took away my ability to communicate to others. I became very self-conscious about my hearing. Now that I’m older, I’ve come to terms with my hearing loss and the disease. I’ve also realized that even though NF does factor a lot into my decision-making, it doesn’t dictate my entire future.

The best thing to do when facing NF is to pray, stay positive, and try not to stress over every doctor’s appointment, MRI, or hearing test (even though they may be overwhelming at times). The greatest advice I would give to anyone who has been newly diagnosed with the disease or has been fighting it for years is to remember that NF doesn’t define you. For a while, I had a tough time separating my identity from the disease. It’s crucial to not base your self-worth on what you can and cannot do because of NF. In the end, how you perform as a human doesn’t define who you are as a person. To be able to fight against not only tumors, but the anxiety, depression, and alienation that comes with the disease, further proves that people fighting NF have an incredible amount of emotional and physical strength.




Hobby Yoga, writing, and drawing