Khen Carter was born and raised in Israel and wasn’t diagnosed with sickle cell disease until 11 months old. She spent her childhood in and out of the hospital and began receiving regular blood transfusions to manage her pain. Now a nursing student at St. Xavier University, she has had to take semesters and years off in order to deal with her disease. “As I’ve grown older, my pain has gotten a little worse,” she says.
In 2019, she was diagnosed with a blood clot in her neck and started taking blood thinners. Two years later, she had a stroke, spending a month in the hospital, unable to move and walk without assistance. And in January 2022, she had a second stroke, forcing her to take the next year off school. Doctors told her she needed to slow down. “They said it was for the best and for my health,” she says. “I thought I might as well be in pain doing something I love. But it was exacerbating my crises. It wasn’t worth it in the end.”
Still, Khen is determined to finish her studies and graduate. “It has been one of the longest journeys,” she says. “It has been extremely hard, but I tell myself that it’s a bad day or a bad week—even a bad month—but it’s not a bad life. We have to keep looking at the light at the end of the tunnel.”
She’s also passionate about advocating for other sickle cell patients. “There are a lot of misconceptions about being in the hospital or going to the ER as a sickle cell patient,” she says. “People don’t really understand how bad the pain can get and how it can start out of nowhere. Once you’re in that crisis, the pain is weighing down on you. It can be hard for us as sickle cell patients to get the care that we deserve.”
Khen also wants people to know how important it is to donate blood for sickle cell patients like her, many of whom receive transfusions every few weeks. “It actually makes a difference in people’s lives, especially sickle cell patients. It helps us have a healthier lifestyle,” she says. “Blood donors are doing something pretty simple, but for something so small, it makes the biggest difference in someone else’s life.”
“We all have our own struggles and our own battles. We’re all victims of something,” she says. “I have sickle cell, but sickle cell doesn’t have me. I am going to win this battle.”
The countless hours spent in the hospital, the friendships she made along the way, and the people who helped her inspired Khen to write a children’s book for other children with sickle cell disease (SCD).Learn more.
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