Rutherford County family faces rare genetic disease as doctors work on potential treatment
Vanderbilt Health recommends protecting your retina by using UV sunglasses to help delay the onset of symptoms.
NASHVILLE, Tenn. (WSMV) - A Rutherford County family is grappling with the reality of a rare genetic disease that causes progressive vision loss, hoping that a cure is found soon.
Zane McKee, who is now legally blind, was diagnosed with retinitis pigmentosa (RP) as a child.
“It’s one of those conditions that is awful,” Zane said, reflecting on the impact RP has had on his life and his family.
The disease affects the retina and eventually leads to severe vision impairment. Now, his 15-year-old daughter, Allie, has been diagnosed with the condition. This is making their quest for a cure more urgent than ever.
“It’s a disease that affects the retina,” Zane explained, “and eventually, you are left with very limited central vision until it diminishes altogether. They’re working on treatments and cures...but currently, there is, frankly, just no cure, no treatments.”
Despite the challenges, the McKee family remains resilient. They are working to restore their 100-year-old home, a place filled with memories and history. For Zane, the race is on to complete the renovations while he can still see the final product.
“Regardless of whether or not I lose my eyesight completely, it’s still going to be our home. And that’s important to make that very clear that it’s home, it’s always been our home, and it’s going to remain that way,” he said.
Allie, who is coming to terms with her diagnosis, reflected on how her vision has affected her experiences growing up.
“It didn’t really bother me until I got older...I really couldn’t just take part in the fun because I couldn’t see as well in big crowds or in dark places. It’s hopeful. I mean, it’s good to have hope,” Allie said.
While there is no specific treatment for RP yet, Vanderbilt Health recommends protecting your retina by using UV sunglasses to help delay the onset of symptoms. The Vanderbilt Eye Institute is also working on a clinical trial to test whether NAC, a strong antioxidant, can slow the progression of the disease.
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