Stargardt’s Disease

Stargardt’s disease is a disorder that affects the retina. According to the National Eye Institute, “ 1 in 8-10 thousand people have Stargardt disease.” Statistically speaking, roughly 826,888 people in the world have this condition. I had the privilege of speaking to one person affected by this disease, Kinshuk Tella, a senior here at Miamisburg High School.

Kinshuk had been experiencing symptoms for as long as he can remember. His parents began to become concerned and took him to many different doctors because of his rapid vision decline. They went all over Ohio, visiting every major city. The doctors began claiming Kinshuk was simply lying about his symptoms. Finally, when Kinshuk was in second grade(7 years old), they went to a specialist in Columbus, where he was diagnosed with Stargardt’s disease. Kinshuk claimed to have felt relieved and angry with his diagnosis.

Stargardt’s disease deteriorates the macula, which is responsible for straight-ahead vision. Unable to see very well straightforward, Kinshuk often looks off to the side using his peripheral vision, which is much clearer for him. Kinshuk, who is in Wind Symphony and is the Section Leader for the baritones in the Miamisburg High School Marching Band, often struggles to sight read his music. He will take pictures of his music on his iPad and memorize every piece of music he gets as soon as possible. He also has to work twice as hard to reach his place on the field while marching, seeing as it is difficult for him to see the drum majors. Kinshuk is arguably one of the most hardworking and talented individuals in the band program this year.

Stargardt’s disease is a genetically inherited disease, meaning one of your parents either has the disease or both are carriers. In other words, as stated by the National Eye Institute, “In autosomal recessive inheritance, it takes two copies of the mutant gene to give rise to the disease. An individual who has one copy of a recessive gene mutation is known as a carrier.(...) In autosomal dominant inheritance, it takes just one copy of the mutant gene to bring about the disease. When an affected parent with one dominant gene mutation has a child, there is a 1 in 2 chance that a child will inherit the disease.” No one in Kinshuk’s family has the disease, but at least one of his parents is a carrier.

Rarely, does someone with this condition go completely blind. While this is relatively good news, the person is still left with weak vision. Kinshuk opened up to me saying, “Having that vision loss on its own is a constant reminder.” He is always aware that he is partially blind everywhere he goes. There is no cure for Stargardt’s disease, but there are trials and studies in action. Kinshuk reported wanting to take part in a trial in the future.

Because Kinshuk is a senior, he has had to put thought into what careers he can do with his disease. Multiple careers are completely out the question due to his poor vision. Kinshuk is also unable to drive any vehicle. Thankfully, he has always been a kid infatuated with animals and nature. He plans on studying Ecology or Environmental Sciences.

The disease is rare, but should not be looked over. If you would like to help out or donate visit https://www.fightingblindness.ie/donate/donate_now/