Rebecca Alexander, a psychotherapist in New York City, was diagnosed with Usher syndrome, a rare genetic condition that causes both vision and hearing loss, when she was in college. Initially diagnosed with retinitis pigmentosa, a progressive vision loss condition, she later experienced cookie-bite hearing loss. Upon receiving the Usher syndrome diagnosis at the age of 19, Alexander struggled to come to terms with the news. However, with the support of her mother and Joan E. Smith, the head of deaf and hard of hearing students at her college, she began to advocate for herself and embrace her diagnosis, even learning sign language. Despite the lack of treatment for Usher syndrome, Alexander has chosen to undergo cochlear implants and is actively involved in raising awareness for the condition.
Usher syndrome is an inherited disorder affecting both the ears and eyes, with three subcategories. These subcategories range in severity, with Type 1 being the most severe, resulting in deafness and rapid progression of vision loss. Type 2 is the most common form, with a milder hearing loss at birth that progresses to profound hearing loss and vision loss. Type 3, the mildest form, involves slower and later progression of hearing and vision loss. Children inherit Usher syndrome when both parents carry the genetic mutation. There is currently no cure or treatment for Usher syndrome, but research is being conducted on potential gene therapy and other methods to potentially restore function.
Despite the challenges presented by Usher syndrome, Rebecca Alexander has been living her life to the fullest. A believer in focusing on what she can do rather than what she can’t, she has climbed Mount Kilimanjaro, run with the Olympic torch, and swam to Alcatraz. She emphasizes that she hasn’t overcome her condition but has learned to live with it and adapt in different ways, such as learning sign language and protactile, a form of communication for deafblind individuals based on physical contact. Alexander has also authored a memoir, “Not Fade Away: A Memoir of Senses Lost and Found,” and works as a psychotherapist, inspiring others with her resilience and determination.
Rebecca Alexander’s involvement in the Usher Syndrome Society’s “Every Second Counts” campaign has been a significant step in raising awareness and funding for Usher syndrome. The campaign aims to highlight the importance of living life to the fullest despite the challenges of the condition. Alexander’s story of advocacy, resilience, and adaptation serves as an inspiration to others facing similar circumstances. By sharing her experiences and participating in the campaign, she hopes to provide support and encouragement to those affected by Usher syndrome and to be a role model for others in similar situations.
The diagnosis of Usher syndrome has been a journey of self-discovery and empowerment for Rebecca Alexander. With the support of her mother and mentors like Joan E. Smith, Alexander has learned to advocate for herself and embrace her diagnosis. She continues to push boundaries and challenge herself, demonstrating that it is possible to live a fulfilling life despite the challenges presented by Usher syndrome. Through her involvement in advocacy efforts and her personal achievements, she has become a beacon of hope and inspiration for individuals facing similar genetic conditions. Her story serves as a testament to the resilience and strength of the human spirit in the face of adversity.
