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Stories of NF: Amanda Rose

By June 21, 2021February 28th, 2024NF2-SWN, Story of NF

After a misdiagnosis in January 2020 due to double and blurred vision, I was officially diagnosed with NF2 after a brain surgery on February 28, 2020.

Like anyone who receives a life-changing diagnosis, I went through a period of grief for several months. It’s crazy how your life can seemingly change in one instant. However, after pulling myself up with tremendous help from my husband, family, and friends, I came to the realization that this diagnosis does not have to affect my daily routine.

I struggle with double vision, a symptom I was dealing with long before my diagnosis. I also have occasional hearing loss in my right ear, which comes and goes, and sounds like someone is talking to me underwater. It’s still manageable, which is a true blessing. But I can still do the things I love. Sure, I have to attend more doctor’s appointments than the average person, but I’m learning to cope with that, and my husband and family are so good about making them fun — going out to dinner or somewhere fun after each appointment.

After my husband and I had the time to process my NF2 diagnosis last year, we made a goal of spreading awareness about NF as much as we possibly can. In addition, we are doing our best to share the idea that a life-changing diagnosis is not necessarily a setback, but can be used as a tool to help others. My hope for my diagnosis is that if I can help even one person see their value, regardless of their diagnosis, I’ve succeeded.

I have learned to control the things I CAN control, because there will be a lot of things in my future related to NF2 that will be completely out of my control.

I don’t plan to make any changes to my future goals. If an issue arises due to NF2, I will deal with it head on. Just five days before I was diagnosed with my brain tumors, I opened a boutique floral and gift shop. I’ve owned a small business for over 10 years designing and planning weddings, wedding flowers, and wedding stationery. It’s truly been a dream.

Amanda Rose’s Story of NF2 also appeared in the Spring 2021 issue of NF News.