Heather Presnar’s Story: Living with Stargardt Disease

 TThe Presnar family (Clockwise from upper left): Heather, Chris, Alex, and Melita he Presnar family (Clockwise from upper left): Heather, Chris, Alex, and Melita

By Rick Elia

When you’re the catcher, the ball always comes to you.

Heather Presnar wouldn’t have had it any other way.

“Being a catcher I had control,” the 37-year-old resident of Union Township, New Castle, PA, recalled of her playing days. “I knew where that ball was at all times."

“I was able to see where it was hit. I knew where the batters hit. I had more control if I was the catcher than if I was an outfielder.”

Heather started playing slo-pitch softball when she was 7 years old and finally hung up the spikes at age 32. She also played basketball in high school, graduated from college, and worked several jobs until leaving the work force to raise her two young children.

Nothing out of the ordinary here until you learn she did all that despite having Stargardt disease, an inherited retinal disease that causes progressive vision loss.

Her vision issues were first recognized when she was 7 years old. Two years later, at age 9, an eye specialist in Pittsburgh diagnosed the problem.

At first Heather used large-print materials and a hand-held magnifying glass to follow her lessons in school. She started wearing special glasses in eighth grade. In later years, she would start using several other types of low-vision equipment.

“When you’re in high school, you don’t want to accept the fact that you have an eye problem or the fact you have anything wrong with you,” she said. “Kids can be mean, and the last thing you want is to be made fun of because you are different.”

After high school, Heather went on to graduate from Slippery Rock University with a degree in safety and environmental management. In college, she had note takers, lived off campus, and walked everywhere.

Her college internship was in the safety department at Allegheny General Hospital in Pittsburgh. ”For one project, I took pictures of and listed all the hazards associated with confined spaces and said what type of personal protective equipment would be needed.”

After graduating then working as a teacher’s assistant, Heather took a job as a technician with her long-time optometrist Dr. Paul Freeman and his wife Dr. Kathy Freeman at Allegheny General Hospital.

Her job brought her in constant contact with the patients. Her own vision issues helped her empathize and develop relationships with them. “Some people with vision problems don’t work; they don’t do things…but…I was able to explain to them how I did things. It motivated some of them to go back to work or made them want to get equipment to help them see.”

After working several years, Heather took time off to have two children, Alex (5) and Melita (3).

She hopes to soon rejoin the workforce part time.

“Interviews are a struggle because even though I know I’m looking at the interviewers straight on, they may not feel like I am interested in the job because my eyes look like I am looking elsewhere."

“I feel if they were more knowledgeable about my eye problem and the things I have been able to do over the years, they would be understanding. I’m adaptable to anything. I learn jobs easily.”

Heather receives invaluable support from her husband, Chris, of 7 years; her parents, Tom and Jeanne Sesko, who live across the street from her; and her in-laws, Randy and Lynn Presnar.

“My parents are my biggest supporters. Without them I honestly can say I would not be where I am today.” 

Despite all the years Heather’s had this disease, her vision had been virtually unchanged until recently. “The disease will continue to progress….”

She admits sometimes her situation can be discouraging.

“Then you think to yourself and look at others’ situations and see they have it much worse. You thank God you are still able to do things, and you just move on.”

Moving on is something she’s proved to be very good at, saying “I wonder myself how I do it sometimes.”

What she doesn’t wonder is what advice she would give a young person facing this disease as she did three decades ago, “Don’t give up. Don’t let people get to you. Yes you have the eye problem but also prove to people they’re wrong. You can do things—play ball, work, marry, have children. Don’t let anyone say you can’t because you can.”