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A Few Words From a SICHL Donor
My father had hearing loss, as did his mother. It was genetic and got passed on to me in my mid-20s. I was reluctant to accept it. I had watched hearing loss tear apart my father’s life – leading to problems at work, social isolation and sadness. I was terrified that my life would be the same. So I hid it, ignoring my hearing loss and hoping it would go away. It did not. In fact, it got worse, and I was forced to get hearing aids. But I hated to wear them. I was scared and ashamed. I hid them as best I could and never mentioned them.
But then I had children and everything changed. My hearing loss is genetic so I worry that I may have passed it onto them. Since it is adult-onset, we won’t know for 15 years or so. I saw them watching me hide my hearing loss and knew I was passing on a legacy of stigma and shame. This was not something I wanted to do. I needed to accept my hearing loss. So I did.
I have not looked back and am now active as a hearing health advocate. I serve on the board of two leading hearing loss organizations – Hearing Health Foundation and Hearing Loss Association of America. I also write a weekly blog at www.LivingWithHearingLoss.com, where I share the ups and downs of my life with hearing loss and provide tips for living better. I hope that by sharing my story, I will inspire others to live more comfortably with their own hearing loss.
Supporting scientific research about hearing loss is very important to me. Only through research, will scientists discover new ways to prevent, treat and cure hearing loss for the more than 50 million Americans that suffer from it. Most of this research is focused on regenerating the delicate hair cells of the inner ear that are damaged through noise induced hearing loss or aging. So when I came across Dr. Nico Grillet’s work (on Facebook of all places!) on the genetic predispositions and causes of hearing loss, I was intrigued.
I reached out to Stanford and last summer, I had the chance to meet Nico and tour his lab. I was very impressed. Not only was Nico smart, creative and organized, he was also incredibly passionate about his work. I knew that he would work tirelessly to tackle the very complex research problems involved in the study of genetic hearing loss, and that he would partner with others in the field to accelerate the timetable to solutions.
My husband and I were incredibly pleased to offer Nico the financial backing to jump-start his lab and his important hearing research at Stanford. We will be watching proudly as he continues to make progress in his work and in his career. I encourage anyone who is touched by hearing loss to consider supporting this important work, in whatever way is most meaningful to you.