When Pat Kosmerl suddenly began to lose her sight at 70, she was left with more questions than answers. After several months and consultations with many medical professionals, she finally received a diagnosis: occult macular dystrophy (OMD), a rare form of cone dystrophy that causes progressive loss of central vision.
Hearing the news “was quite crushing,” Pat recalls. It was especially difficult because her doctors didn’t provide her with any advice or direction for where she could get help living with vision loss.
But Pat’s instinct for problem-solving, honed during her 40-year career at IBM, kicked in. “If clients had an issue, I knew I needed to track down the answers. I approached my vision loss in the same way.” She began connecting with resources, including Hadley.
As soon as Pat logged onto the Hadley website and could customize her devices’ font and colors to better see the screen, she realized, “I’m dealing with an organization that gets it. They understand.”
Since then, Pat has completed more than 100 workshops on topics ranging from cooking and technology to safety and home organization. And she regularly joins Hadley’s discussion groups and listens to Hadley’s podcasts.
“Hadley has been especially helpful with emotional and social aspects,” Pat says. “Hearing from others facing vision loss has given her a vital sense of reassurance: “I feel validated. I know I am not alone.”
Pat describes walking outside into her Chicago neighborhood “like walking out into the fog with a big gray ball in the middle.” Faces are unrecognizable, even just a few feet away. Her sensitivity to light continues to intensify. Color perception within her central vision is also diminishing. Currently, there is no treatment available to reverse or halt the decline.
Hadley is helping Pat come to terms with her vision loss. “Hadley is saying you don’t have to give up things, you just need to do them in a different way,” she explains. While Hadley is respectful of the loss, it doesn’t dwell on it. It’s not about sadness and self-pity. Hadley is upbeat. The focus is on moving forward.”
Thankful for this support, Pat also gives back as a donor. “I am very appreciative and want Hadley to be there to help others,” she says. “I am happy to support Hadley to make someone’s life a little bit easier as they are dealing with vision loss just as I am.”
For Pat, Hadley is both a community that sustains her and a cause worth sustaining.