Rebecca Alexander’s journey with Usher syndrome, a rare genetic condition causing both vision and hearing loss, began during her college years. It was a tumultuous time as she grappled with her recent diagnosis, but meeting Joan E. Smith, the head of deaf and hard of hearing students, proved to be a pivotal moment. Smith’s mentorship provided Alexander with a safe space and empowered her to advocate for herself.
Years later, Alexander has embraced her role as a disability advocate, influenced by her mother and Smith. Her advocacy efforts were recently spotlighted in the Usher Syndrome Society’s “Every Second Counts” campaign, aimed at raising awareness and funding for the condition. The campaign’s 30-second spot, featuring Alexander, aired on billboards in Times Square, drawing attention to the challenges faced by individuals with Usher syndrome.
Alexander’s journey with Usher syndrome began with vision troubles and hearing loss during her school years. Despite struggling to see the blackboard and experiencing difficulty hearing certain sounds, she continued with her studies. Eventually, she was diagnosed with retinitis pigmentosa, a progressive condition leading to vision loss, and later with Usher syndrome at the age of 19.
Her diagnosis brought a mix of emotions, and Alexander struggled to come to terms with it. However, she embraced learning sign language and sought to mask her perceived flaws by striving for academic and physical perfection. Over time, she learned to accept her diagnosis and became more curious about Usher syndrome, recognizing the importance of embracing her identity and advocating for herself and others with the condition.
Usher syndrome is a rare disease affecting approximately 20,000 Americans, characterized by hearing loss and retinitis pigmentosa. It is inherited in a recessive manner, meaning both parents must carry the genetic mutation and pass it on to their child. The syndrome is categorized into three types, with Type 1 being the most severe, often leading to deafness and blindness within the first decade of life.
Despite the challenges posed by Usher syndrome, individuals like Rebecca Alexander are shining examples of resilience and advocacy. Through her journey, she has found strength in community support and continues to raise awareness about the condition, emphasizing the importance of every second in the fight against Usher syndrome.
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