Erika was diagnosed with NF2 at the young age of 5 after having cataracts surgery and finding bilateral vestibular schwananmas on the auditory nerve. She also struggled with her vision and became mostly blind in her left eye due to the presence of a tumor on the optic nerve. Despite routine MRI scans and several hospitalizations, her childhood was relatively carefree and joyous. Erika never let her disease interfere with her happiness and her tumors remained stable through adolescence.
Around high school age though, Erika lost her full sense of hearing in her left ear, had gamma knife radiation on the left brain tumor and radiation on her optic nerve along with other minor surgeries. Despite all of these medical concerns, Erika graduated high school at age 17 and enrolled in college.
During college, she had spinal surgery to remove a growing tumor in the thoracic spine which took months to fully recover from as part of her ribs had to be removed along with the tumor. Yet, Erika remained a full time student studying both biology and psychology, with 3 part time jobs and obtained her bachelors degree in just 4 years.
Unfortunately, Erika’s tumors continued to grow steadily and 6 months after graduation, Erika gradually but rapidly lost the hearing in her right ear. Due to this, she quit her job as a biology teacher to focus on her health. This new challenge and huge life change however only added to her motivation to succeed. She immersed herself in the deaf community and focused her energy on learning sign language, becoming fluent in just 2-3 years.
Erika started infusion treatment upon losing her hearing and had major brain surgery to remove the tumor on the right which left her completely deaf and with partial facial paralysis. She experienced trouble with her vision and extreme dry eye due to this and now uses prosthetic lenses as well as eyelid weights. The past few years have been exhausting with seemingly one daunting blow after another. Yet, she still finds herself staying positive and dedicating her life to the advocacy of other deaf and late deafened individuals.
Erika is now the Florida ambassador for NF2 biosolutions and strives to encourage those with NF2 and hearing loss to learn sign language as a way to maintain independence and decrease feelings of isolation due to becoming deaf. She is committed to finding a cure and is excited about the prospect of gene therapy.
Erika knows her fight is nowhere near over and allows her challenges and setbacks to act as forces that pull her back only to propel her forward once again.
Erika has and always will find the speck of light through the darkness. Her positivity is infectious and her spirit contagious as she continues on her journey with this rare disease. She hopes to inspire all with NF2 to lead full meaningful lives and never allow their disease to restrict them from accomplishing their dreams.
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