Usher Type 3A
Angela's Story
When I was 8, my parents took me to a retina specialist because they noticed I was having trouble seeing in the dark. After a long wait and a brief evaluation, the doctor found nothing to be wrong. At 15, my optometrist noticed I had difficulty walking down a dimly lit hallway and referred me to the Lighthouse at which point I was diagnosed with retinitis pigmentosa (RP). Despite having gone to an audiologist at 17, I was not found to have a hearing impairment until college. I was taking classes without hearing the professor and greatly benefited from my first pair of hearing aids at 19. While Usher syndrome was mentioned, I had not been referred for genetic testing and formally diagnosed until I was 37.
I am now 40. I have 6 degrees of vision in one eye and 4 in the other with a best corrected visual acuity of 20/60, extreme sensitivity to glare, and haziness more in the right eye than the left. I’m on my fourth pair of hearing aids with moderate to severe bilateral hearing loss and word recognition at about 80%. I have difficulty hearing people who are soft-spoken or more than a few feet away from me. I worked successfully as an attorney advisor for Social Security until a little over a year ago when I was suffering from frequent headaches due to eye strain. I started training last year at my local blind center, and now, I volunteer there two to three days per month, leading support groups and doing client intakes. My goal is to transition into a career as an author. I’m currently seeking representation for my paranormal cozy murder mystery and writing the second book in my series. I also write a weekly blog on my Facebook Page, Angela’s Words, about my experiences in an attempt to spread awareness. My other hobbies include reading, baking, and traveling, which I love and am happy to continue doing with assistive devices.
2023.5
