Rep. John Schlegel is sponsoring House Resolution 349, which designates April 2024 as Retinal Blindness Awareness Month in recognition of a Lebanon County woman who has been battling the disease most of her life.
“Several retinal diseases can result in blindness, including Retinitis Pigmentosa (RP), a rare genetic condition that causes light-detecting cells in the retina to breakdown. This condition typically begins in childhood or adolescence. It is progressive and has no cure,” said Schlegel.
RP affects about 100,000 people in the U.S., including 20-year-old Gracyn Smith of Lebanon County, a sophomore at Coastal Carolina University. Gracyn was diagnosed with RP at the age of 5, and as the disease progressed, it has affected her night vision, peripheral and central vision. Other symptoms may include loss of color perception and sensitivity to bright light.
“An independent-natured person, Gracyn said one of the more challenging aspects of RP is having to ask for assistance when moving about or performing certain tasks. Her visual limitations also make it difficult in the classroom where concepts are often illustrated on a whiteboard or other screen. But Gracyn is hopeful retinal blindness can be cured. She is working through the Curing Retinal Blindness Foundation to promote research and raise awareness for a cure.”
“The Curing Retinal Blindness Foundation is the only patient organization for CRB1 diseases, such as RP, which are caused by mutations in the CRB1 gene. Others include Leber’s Congenital Amaurosis and cone-rod dystrophy. Researchers are studying new gene therapies, medications and treatments to prevent and reverse vision loss caused by CRB1 diseases.”
Rep. John Schlegel encourages those interested to learn more about retinal blindness by viewing his discussion with Gracyn Smith.
