I had a brief but impactful brush with cornea donation when I was in first grade. Around the age of six, one of the children in my Girl Scouts Troop died of a very rare disease. It was the first loss of my life and while dealing with the weird and intangible grief at such a young age was confusing and blurry, there is one detail I vividly remember: I overheard someone say the little girl’s parents had donated her eyes.
At six years old, this was shocking and it stayed with me for a long time. I didn’t feel negatively toward eye donation; I was, simply, trying to wrap a young, impressionable brain around the concept. But I do remember very distinctly thinking: Well, they’re perfectly good eyes. Someone ought to have them.
So when I found out about how Eye Donation Month (November) raises awareness about the life-changing opportunities created through eye donation, it hit close to home. I knew I wanted to spread the word.
The Eye Bank Association of America connected me with cornea donation recipient Amy Fogle, who now works at the Kentucky Lions Eye Bank. Amy told Femestella,
“I had known since my mid-20s that I had a disease called keratoconus, which is a thinning of the cornea. I could see clearly through only one eye.”
Keratoconus is a rare condition that affects less than 200,000 people in the US per year. The clear, dome-shaped tissue of the eye that covers and protects the cornea thins and bulges outward into a cone shape. While the cause of keratoconus is unknown, symptoms often appear during puberty or in a person’s late teen years. The symptoms can include blurred vision and sensitivity to both light and glare.
Keratoconus does not always culminate in as severe a treatment plan as cornea transplant; oftentimes, if keratoconus is caught early on, glasses and contact lenses can be enough to correct it. In Amy’s case, her disease was advanced enough to require a transplant. She was just 30 years old when her doctors decided it was time.
“It’s a surreal moment when you are told that you need a cornea transplant at age 30.”
While cornea donation has a 95% success rate, it can be difficult for many prospective patients to come to terms with the unknown.
“So many questions came to mind: How long will I need to be off work? Is it covered by insurance? Will I be on a waiting list? I also realized that someone would have to die for me to keep my surgery date. That’s humbling.”
Of course, Amy’s story is included in that 95% success rate. Her transplant went well and today, she can see.
“Few people can say they received a life-changing gift, and most of those have been able to thank the person who provided that gift. I will never be able to do that, but I will be forever grateful to my donor and to his or her family for their generosity.”
“How do you express your gratitude for being able to see your daughter born? Your son get married? Your father take his last breath? Your new grandchild??”
Part of spreading the word about cornea donation is dismissing a lot of the myths that come with any kind of organ donation, as well as myths particular to cornea donation. Some common myths about eye donations are that you can’t donate if you’re blind, had Lasik eye surgery, and/or have cancer. But spoiler alert: these myths are just that, myths. They have no basis in truth.
In fact, most people with cancer are eligible to donate their corneas; the few exceptions include certain blood and eye cancers. But even then, cornea donations are still accepted and used for research, so the donation isn’t made in vain. Even people who have cataracts or had laser correction surgery, corneas can be donated.
I’ve been thinking about the little girl from my Girl Scout troop — how her life may have ended but she was still able to give an unimaginable gift to someone else. And hopefully that someone else is still out here, with her perfectly good eyes. Someone ought to have them.
If you’re interested in registering to be a cornea donor, you can learn more about the process and register to become a donor at restoresight.org. Raise awareness of cornea donations online by using #EyeDonationMonth18.
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Photo by Min An
Steph Osmanski is a freelance writer and social media consultant who specializes in health and wellness content. Her words have appeared in Seventeen, Life & Style, Darling Magazine, and more. She is currently pursuing an MFA in Creative Writing at Stony Brook Southampton and writing a memoir.