Father and Daughter Share a Vision for a Cure

Growing up, Lisa Lloyd watched her dad go blind from retinitis pigmentosa. She learned that vision loss doesn’t have to limit one’s opportunities as she watched him navigate the world and work successfully as a biochemist, software engineer, and for the last 26 years, a privately practicing attorney. 

But that knowledge didn’t stop Lisa from being devastated when, at the age of 22, she too was diagnosed with retinitis pigmentosa. “At first, I panicked,” Lisa recalls. “I cried the whole weekend. But that was in large part because the doctor just told me there was no cure.  I was given no hope.”

Dean notes that it is extremely important that an initial diagnosis be given thoughtfully.  “There needs to be an approach to delivering the diagnosis that doesn’t cause harm beyond the condition itself,” he says.

Today, Lisa and Dean are both ambassadors for the hope of bringing an end to blinding retinal degenerative diseases that affect more than 10 million Americans. Lisa is in her fourth year as a director of development for the Foundation Fighting Blindness in the San Francisco Bay Area, and her dad is a participant in Second Sight’s clinical study of the Argus II artificial retinal prosthesis, touted as the world’s most advanced “bionic retina.”  The device has enabled him to sort socks and navigate a stripe on the floor, two things that he couldn’t do before the trial. Dean is also active in local Foundation chapter meetings and events that Lisa and her colleagues organize.

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The Lloyds are also big fans of Jacque Duncan, M.D., a Foundation-funded clinical researcher at the University of California, San Francisco. As her patients, the Lloyds applaud her for her in-depth knowledge and great bedside manner.  Dr. Duncan has received a career development award from the Foundation, so she can focus on building a successful career in retinal research and patient care.

Dean and Lisa have an X-linked form of retinitis pigmentosa (XLRP) that usually affects men more profoundly than women. In many cases, women are carriers of XLRP and don’t experience noticeable vision loss. At the age of 37, Lisa has far less vision loss than her dad had at that age — it’s more “patchy.” But Lisa isn’t taking her future for granted. She earned her master’s degree in counseling to ensure she had an income and could maintain her independence, in case she loses significant vision down the road.

Lisa says that watching her dad successfully deal with his vision loss has been helpful to her in adjusting to her own situation. “As part of one of my psychology classes, I blindfolded myself for 48 hours, and had my dad give me mobility training. I learned that there is another way of being in the world, and I learned more about what that is. I also realized how difficult it was and gained a lot more respect for him. He is a great role model.”

Dean’s attitude is to not focus on limitations, but rather, make the most out of the situation. He acknowledges that he did have some depression early on with vision loss, but was able to work through it. “I said to myself:  I have a brain that works pretty well. I can hear pretty well. My body works well. Really, I’ve lost just one function.”

While Lisa is very proud of her father for his courage and perseverance, she joined the Foundation with a strong hope for a brighter future for him. “When I took this job, my dream was for my dad to see me again. And slowly but surely, thanks to thousands of deeply committed donors and researchers, my dream is coming true!”