When Leba Sherman got pregnant with her daughter, she noticed that her vision was starting to change. It looked like the lanes were colliding into each other on the highway, she couldn’t read subtitles in movies anymore and she was mixing people up.
“I didn’t think anything of it,” she told the Journal. “They say that in pregnancy, your eyes change. I ignored it.”
Then, once she had her daughter and was still experiencing issues, her husband advised her to get an eye test done. After undergoing an eye exam at Costco, she wore low prescription glasses for a year and started getting headaches. This time, her husband told her she needed to see an ophthalmologist.
The doctor took photos of Sherman’s eyes and found two holes in them.
“He said he wasn’t sure what was going on but that I needed to clear my schedule and see a specialist the next day,” she said.
From there, Sherman, who lives in Beverlywood with her husband and three children, went through extensive testing. The doctor came back with a devastating diagnosis: She had Stargardt disease, a rare genetic eye disease that typically shows up in children and young adults. Often referred to as juvenile macular dystrophy, it can cause someone to lose central vision but still have good side vision.
“This was something I never could have anticipated,” said Sherman. “It was the worst-case scenario.”
Since Sherman had 20/20 vision her entire life, she was stunned. Her doctor said something comforting to her, though.
“It was my waking moment and shifted my perspective.”
– Leba SHERMAN
“I was sitting in a chair in his office and I literally lost it,” she said. “He said, ‘Let me tell you something. I treat patients with this who are nine years old, 12 years old, 20 years old. I have to tell them they are handicapped and going blind. You’re 33. You’re married and you have three kids. You have a graduate degree. You have accomplished what 90% of the people with this diagnosis have yet to accomplish.’ And that’s how it changed my mind. I thought I have to be grateful how lucky I was that this happened after I did all that. It was my waking moment and shifted my perspective.”
Now, four years after learning she had Stargard, she’s created Touched By Elle, a fashion patches company, and donates a percentage of the proceeds to finding the cure for Stargardt. Just recently, she trademarked Braille patches, which are not only for those who read Braille but also for those who want to show their support for people with a lack and total loss of vision.
“I want to raise awareness because this is a rare disease that people don’t know about,” she said. “I want to make others aware of low vision in general because nobody pays attention to people who have it. It’s a struggle so many of us have to deal with.”
The Braille patches are inspirational in nature and contain phrases like, “love,” “vision,” “hope,” “fighter” and Sherman’s signature phrase, “You don’t need sight to have vision.”
Today, Sherman can still drive – except for on the highway – and she has trouble reading books, watching TV and looking at her phone. She will never go fully blind, though.
“My central vision is going,” she said. “You lose your central vision over time and develop blind spots, but thank God, I’m not there. I will have my peripheral vision for the rest of my life. I will probably go legally blind.”
With Touched By Elle, Sherman, who was previously a behavioral therapist, hopes to demonstrate that you can have bad cards dealt to you and still make something good come out of it. “I could have easily been depressed, but I decided I wanted to make a difference and show my words of affirmation that have helped me through these struggles,” she said.
Along with relying on words of affirmation throughout her difficult journey, Sherman has also turned to her faith for comfort.
“I’m such a strong believer,” she said. “My faith in God is above and beyond. I believe that whatever is meant to be will be. God will never let me get worse. He’s given this to me as a present. This is a gift for me to help others, and I have a lot of power. I believe that.”
