One woman’s journey
January 22, 2016
This mother of two won’t let declining vision, a lack of available treatment options, or the 1.5-mile swim from Alcatraz to San Francisco stop her efforts to support retinal research.
I was diagnosed with retinitis pigmentosa when I was 18 years old. It was a follow up appointment after my brother was initially diagnosed. It was simple. Many years down the road you are going to be blind.
A normal-sighted person sees 180 degrees, and the way retinitis pigmentosa works is you slowly start to lose your vision until it becomes so constricted. Like I barely can even see my hands in front of my face. I now can really see them.
I think the biggest challenge is logistics. It’s getting from point A to point B. Being a mom and I can’t drive; how am I going to get my kids somewhere? It takes longer and more planning. So, my life is no different than the mom that lives next door to me. It just takes a little bit more effort.
My kids understand everything. They’ve seen me from being completely independent, to having to depend on a white cane when I walk now. They know that Mommy is losing more of her eyesight and that one day, unless the doctors find a cure, that I will be completely blind.
I think what I remember more than telling my husband about losing my eyesight is how my father reacted when Ron asked if he could marry me. And, my father said to him, “You know, you’re taking on a very big responsibility, you know, with Lorie and her eyes. Are you up for that?” And, obviously he was because here we are 12-13 years later.
My husband and I started Alcatraz Swim for Sight in 2012 because I thought to myself, “Well, I can swim from Alcatraz. That’s not a big deal. But, I’m not doing it for my health.” So, this is an opportunity to turn it into a platform and raise awareness for visual impairments, visual diseases, as well as raise money for the doctors to find a cure. And, we’ve now been doing it for 4 years.
Our fourth annual Alcatraz Swim for Sight was a little bit more challenging than other years. The day of, the currents were super strong; the water was super choppy.
One of the most challenging things about having my eye disease is that for the longest time, other than my brother, I didn’t know anybody else who had my eye disease. It’s so rare! And that’s pretty lonely. Now, I no longer have to be lonely. I have this community of swimmers and friends and other patients who have—even if it’s not my disease, it’s a similar retinal inherited disease that’s robbing them of their eyesight. And, we can join forces to help make a difference together.
Recently I’ve considered being genetically tested. I think up until this point, it never made sense. The science wasn’t there. It was very expensive and inconclusive. It’s super exciting because you know that there’s a lot of smart people in your court, there’s a lot of smart people working on your behalf. They’re rooting for you.
It gives me hope because I’m always wondering, what am I going to do next? The science is changing. The question is will it change fast enough to make a difference in my lifetime? And, I don’t know the answer to that.
(End screens in the video)
Dedicated scientists and companies around the world are researching ways to address inherited retinal diseases, like Lorie’s.
Thank you to Docusign for providing footage of the 2015 Swim for Sight event.
Brought to you by Spark Therapeutics