Erebi Nyenkan is more than her disease
Like many 24-year-olds, Erebi Nyenkan, is busy: starting her career, maintaining relationships with her friends and family, and making time for fun fills up her days. Only she’s also balancing one factor many other young adults don’t: the realities of living with sickle cell disease.
Erebi earned a degree in legal studies with a minor in criminal justice. She now works as a residential counselor at a mental health facility, a job she describes as challenging but deeply rewarding. Outside of work, she finds joy in cooking, boxing, and running. She said she loves to be active outdoors, going hiking, camping, and soon fishing. She’s doing it all. Just with a few precautions.
“Sickle cell is not a disease you have to struggle through—it’s a disease you get to conquer every day,” she said. “Growing up, I never thought it would be possible to go to school, to graduate, to have a job, to have a whole life outside of it. But I do.”
A whole life beyond the hospital
Diagnosed at age 5, Erebi grew up with sickle cell as a defining part of her childhood. Sickle cell disease is an inherited blood disorder that causes unhealthy red blood cells. Symptoms include fatigue, weakness, pain, and swelling. It increases the chances of infection.
Erebi’s childhood memories include having to miss major milestones – sometimes even half of the school year – because of pain crises that would frequently land her in the hospital. “My teachers would have to bring me my schoolwork, and classmates would write me notes,” she recalls.
As she grew up, she felt her identity was overshadowed by her diagnosis: “Everything was, ‘This is Erebi. She has sickle cell.’ It was just so much.” Now, she says, she feels seen as a whole person—someone who has sickle cell but is not defined by it.
Erebi credits her care team at M Health Fairview, especially hematologist Alex Boucher, MD, for helping her think about life beyond sickle cell. Boucher is also an associate professor with the University of Minnesota Medical School.
“When people have lived with this their whole life, it has a negative stigma," Boucher said. “But it's not sickle cell patient Erebi. It is Erebi who has sickle cell, but she has much more than that one trait. Sickle cell is not just the people in the hospital. Sickle cell is somebody who's doing addiction counseling work. It’s a professional DJ, professional comic, and business school graduate who works in the financial district."
That reminder was life-changing for Erebi.
“The conversations Dr. Boucher and I have had about my life outside of sickle cell have been really nice,” she said.
Living life while managing sickle cell
Erebi said that sickle cell disease does still affect her everyday life.
She still has crises, which involve muscle ache often tied to changes in weather, strenuous activity, or altitude. Erebi has learned how to take care of herself—staying hydrated, taking breaks, and using over-the-counter pain relievers—so she doesn’t end up in the hospital.
“It’s a lot more manageable now as I’ve gotten older,” she said.
Life with sickle cell disease began to improve for Erebi when she started using a medication called hydroxyurea about eight years ago. The daily pill has dramatically reduced her painful episodes and has allowed her to achieve ambitious goals.
Looking back, Erebi acknowledges the challenges of her journey. “It doesn’t get easier, but it gets more manageable,” she says. “It is very hard, especially for a kid, and for families watching their loved one go through it. But there are resources out there. There are new medications now that didn’t exist when I was a child. There is hope.”
She hopes research will continue to give future generations even better treatment options. More than anything, Erebi wants others with sickle cell to know that living fully is possible.
Learn more about sickle cell care from M Health Fairview and how to help support research for sickle cell and more rare disorders.
