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Home / Health Conditions / Sickle Cell Disease / Beyond the Crown: Championing the Visibility and Voices of Sickle Cell Patients

Beyond the Crown: Championing the Visibility and Voices of Sickle Cell Patients

Photo: Dima Hendricks

Dima Hendricks is still getting used to being seen. It’s hard to miss someone wearing a sparkling crown and sash, particularly at a blood drive. But the unique attention drawn to her is empowering – especially for someone navigating a world where her disease and at times the humanity of her being have gone unseen.

Managing life with sickle cell disease at the forefront has been the only life Dima’s known. She was born with the genetic blood disorder, yet at a time when newborn screening was not mandated. As a result, she went undiagnosed until she was six months old.
While the complications and excruciating pain the disease caused Dima couldn’t always be detected by others, the internal toll on her mentally was no less painful.

“Imagine trying to be normal and trying to act normal, but you feel like a bus is constantly hitting you, or you’re constantly being stabbed,” Dima says. “It does something to your psyche.”

Throughout childhood, repeated hospitalizations, bouts of jaundice that turned her eyes yellow, and the inability to go swimming due to uncontrollable factors like weather caused Dima to feel excluded and different from other children. But she soon became even more isolated on her journey. At age 12, Dima suddenly lost her mother and found herself in the foster care system, without the knowledge of how to manage her own healthcare.

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“It was a lot for a preteen to try and navigate my own transition and healthcare,” she says. “It was really hard without her.”

Over the years, Dima’s faith, strength and perseverance have sustained her as she’s experienced severe complications related to sickle cell. At 11 years old, she suffered a mini stroke—an unfortunate common plight for children with sickle cell disease. She also experienced countless other complications including becoming blind in one eye, having her gallbladder removed, undergoing open heart surgery, experiencing acute chest syndrome, and landing in the intensive care unit more than 100 times.

And then, there are the sickle cell crises. These intense pain episodes, caused by entrapped sickle-shaped cells in the bloodstream, are best described by Dima as feeling like glass shooting through her veins.

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November 14, 2023. Dedham, Massachusetts. Sickle Cell Warrior and reigning Mrs. Massachusetts Dima Hendricks chats with platelet donor Tiffany Rinne while Rinne gives platelets at the Dedham, Massachusetts Donor Center November 14. Photo by Marko Kokic/American Red Cross

“I’ve given birth to two kids,” she says. “The first time naturally; the second time I had a cesarean. I’d rather go through both experiences before going through a full-on vaso-occlusive crisis.”

Dima knows firsthand one way to help relieve the pain of sickle cell and prevent further life-threatening complications is for patients to have access to blood transfusions. Over the past 40 years, Dima estimates she’s received more than 150 blood transfusions. However, no two patients with sickle cell are the same. Depending on their condition, a patient can need as many as 100 units of blood per year.

“When there’s a blood shortage, there are a lot of warriors that are not able to get their regular transfusions and [red cell] exchanges,” Dima expresses. “And as a result, there’s more pain. There are more hospitalizations. They run into more bias in the emergency room. It’s a cycle that continues to perpetuate because there’s no blood [available].”

Dima’s firsthand experiences and passion for sickle cell advocacy drive her commitment to raising awareness by leading health workshops, participating in panels and through pageantry. Currently, she reigns as the 2024 International Mrs. New England. Her previous titles include Mrs. Massachusetts International, Miss Black Massachusetts USA and Miss Black Dorchester USA. Pageantry provides Dima a platform to increase visibility and give voice to the disproportionate impact of sickle cell on the Black community.

Today she’s clear: her journey to becoming an impact leader has been anything but a solo one. Dima continues to drive change, working with research facilities like the University of Pittsburgh, and helping educators and nurses across schools provide systems of support and care for youth living with sickle cell. She also partners with the Red Cross to host blood drives and takes time to visit drives to simply thank donors.

“I’m not only representing my title…I’m representing other [sickle cell] warriors who need blood so desperately,” Dima conveys in her crown and sash as she stands beside individuals giving blood and begins to tell them about her invisible disease that has required, she and so many others to count on their generosity. “I say…’thank you…what you’re doing is saving my life. It’s because of you that I’m standing here today.”

Join Dima and others in the fight against sickle cell disease by rolling up a sleeve to give blood. Use the Red Cross Blood DonorApp, visit RedCrossBlood.org/OurBlood or call 1-800-RED CROSS (1-800-733-2767) to schedule an appointment today.

By BlackDoctor | Published June 14, 2024

June 14, 2024 by BlackDoctor

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