“I’m afraid of losing my central vision completely. I’m hoping that it stays like this until I’m really old,” says 13-year-old Yelaina.
When Yelaina was just eight years old, her eyesight began deteriorating. Her parents just assumed she needed glasses.
However, at an eye check when Yelaina was 11, her optometrist was worried about her vision and referred her to Associate Professor Fred Chen at the Lions Eye Institute. A diagnosis of Stargardt disease was confirmed.
“At least I knew what was happening,” says Yelaina of hearing the news. “But it’s kind of scary. I found it frightening and upsetting.”
Yelaina at an appointment with Associate Professor Fred Chen
Stargardt disease is an inherited retinal disease that causes progressive central vision loss. A person can develop symptoms at any age, but the younger the onset, the more rapid and severe the disease progresses.
“It’s devastating for a child to be diagnosed with Stargardt disease. They will have to depend on magnifying devices to read. Some will never be able to drive and will become dependent on a guide dog in their early 20s. And then by their 40s, they may need someone by their side at all times to navigate,” says Associate Professor Chen.
There is currently no cure for Stargardt disease and until recently no treatments have been tested in Australia. But this is about to change.
Yelaina is currently attending the Lions Eye Institute Clinical Trials Centre for early-phase human testing of a drug called tinlarebant, to treat Stargardt disease.
Vision loss in Stargardt disease occurs because vitamin A is incorrectly processed in the eyes and this causes a substance to accumulate, which kills retinal cells. Since tinlarebant blocks the delivery of vitamin A to the eyes, it’s hoped that the drug will slow down or stop the deterioration.
Results of the study will not be seen for another 18 months; however Associate Professor Chen says it’s a major step towards discovering a Stargardt treatment.
Yelaina says she felt “happy and hopeful” to be able to participate in this trial.
Yelaina said that her greatest wish is that she will retain the vision she needs to keep doing the things she loves – drawing, painting, playing basketball, and experiencing the outdoors.
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