Louisville family raises awareness about debilitating eye disorder
This rare eye disorder can arrive and progress at any time and has no cure. One family is speaking out in hopes of one day seeing again.
LOUISVILLE, Ky. (WDRB) -- This rare eye disorder can arrive and progress at any time and has no cure. One Louisville family has several family members who are blind as a result. They're speaking out, hoping that new research will help them see again.
Like many mothers and daughters, Elizabeth Bryant and Lynn Forrest are close. These two are exceptionally close. "I've lived my whole 78 years in almost complete darkness," Bryant said.
They know exactly what each other is going through. "You don't know when you're going to go blind and I take these early morning sunrises and the sunsets. I take it all in now because I don't know when I may not be able to see those again. So, those are pretty special," Forrest said.
Forrest and Bryant both began losing their vision as children. Bryant was in the first grade. "She [teacher] put me in the front row, I still couldn't see the blackboard," Bryant said.
A doctor confirmed what she and her parents didn't want to hear. "He told my mom and dad, I had RP, and my mother said, 'well, what is it. What is RP?' He said, 'it's Retinitis Pigmentosa."
Retinitis Pigmentosa is a progressive disease that can worsen with sunlight. Bryant, who now only has eyesight in one eye, compares it to a dirty window.
The inherited disease affects one in 4,000 people, according to the National Eye Institute. "I have four siblings and all four have this disease," Bryant said.
It didn't stop there. "They [family members] have all adapted to us not being able to see, me and Mom both," Forrest said. "Even going to get groceries anymore has become dangerous for me."
Forrest has been around the region, searching for answers. "I think more people need to be aware of what it is. Have children checked."
While there is no cure, Dr. Norman Radtke, a local ophthalmologist said there is new research in three areas: gene therapy, stem cell therapy and drugs. "Induced pluripotent stem cell sheets and the CRISPR kind of approach where you cut out the bad gene are for what I see at this point, the most promising," Dr. Radtke said.
The disease has taken so much. "Until this happens and you lose your eyesight, you just flat take it for granted," Forrest said.
This pair hasn't lost their strength and spirit. "Hopefully I'll see it in my lifetime where they've made some progress with it," Forrest said.
They're holding out hope for a cure and that time will be on their said.
"I think this is very encouraging. I think they're a high integrity group that's doing it and I think there's tremendous potential there," Dr. Radtke said.
According to Forrest, night vision is the first to go, then peripheral vision, followed by focal vision.
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