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Family raising awareness of disease after 19-year-old loses vision
Published Tuesday, August 8, 2017 6:53PM CST
A Martensville woman and her family are raising awareness about a rare disease after she began losing her vision at 19 years old.
Taryn Leason was diagnosed with Stargardt Disease in June after going for a routine eye exam. She noticed her vision was bothering her — she couldn’t see the professor’s slides well during her first year of university. She thought she’d just need prescription glasses, but her optometrist had her tested for Stargardt Disease and she was diagnosed shortly after.
Stargardt causes progressive vision loss as cells in the central portion of the retina die. It’s the most common form of inherited juvenile macular degeneration and can’t be fixed with contacts or glasses.
“It was definitely frustration, confusion and fear,” Taryn said of being diagnosed.
Her parents rushed home from work to be with Taryn, who previously had 20/20 vision. They later went to the optometrist office that evening and were told the doctor had never seen a case like Taryn’s. The family is sharing their experience because they want others to know about Stargardt Disease and are encouraging parents to ensure their children receive routine eye exams.
“This disease does exist. We had never heard of Stargardt before June 13,” Taryn’s mom Tricia Leason said.
Taryn was told there is no cure or treatment in North America and advised to seek counselling and prepare for a new lifestyle. She’s decided not to drive anymore after turning in front of a vehicle she couldn’t see.
“It’s frustrating because I know I checked the road. I checked it multiple times,” she said.
Taryn can see other vehicles when she looks above or beside the road, but straight in front of her is blurry. Reading is similar — she looks above and below the words to make them out. What most people can see at about 25 metres Taryn can see at six meters. But for her, the most frustrating part is the unknown.
“We don’t really know how bad it can get or how fast, but we do know that my peripheral vision will stay, but my central vision will definitely go,” Taryn said.
Taryn’s younger sister Kennedi isn’t showing any symptoms but got tested and discovered there’s a 95 per cent chance she’ll also have Stargardt Disease, which is genetic.
The family is traveling to Thailand in November for Taryn and Kennedi to get procedures done. Taryn will get stem cell treatment in hopes it will restore some of her lost vision and prevents the disease from worsening. Kennedi will receive an injection in hopes of preventing vision loss. The medical costs total around $37,000 and a GoFundMe page has been set up to help pay for the treatment, which is not covered by health insurance.
There is no promise the procedures will help, but the family is open-minded and being positive. Taryn says she’s being strong for her parents and her sister, who she wants to know there’s nothing to be afraid of.
“With Taryn's positive attitude, her determination, and Kennedi is very stubborn, very strong willed, between the two of them they're going to be one heck of a team,” Tricia said.
Taryn says she isn’t letting Stargardt limit her in any way from reaching her goals, including graduating university and becoming a professor.