Thrive by IU Health

September 29, 2022

Social worker: Sickle cell diagnosis turned her into an advocate

Social worker: Sickle cell diagnosis turned her into an advocate

She has lived her life with a disease that has disrupted thousands of lives. Now, this IU Health social worker is supporting others like her.

By IU Health Senior Journalist, TJ Banes,

Education around Sickle cell anemia didn’t come easily when Khajae Henry was younger. Born in Jamaica, she was didn’t know about her diagnosis until the age of one. She was in and out of emergency rooms.

“It wasn’t until family immigrated to America that I received adequate Sickle cell anemia education,” said Henry.

The diagnosis is characterized by a group of inherited disorders where red blood cells contort into sickle cell shapes. The cells die early leaving a shortage of red blood cells and can block the blood flow resulting in serious pain. It’s estimated 200,000 Americans are diagnosed with Sickle cell disease. Treatments can include medication, blood transfusions, and in some cases, bone marrow transplantation.

September during “Sickle Cell Awareness Month,” Henry, a social worker at Riley Hospital for Children, is sharing her personal story.

“Something unique to me is that I am a healthcare worker; I live with Sickle cell anemia,” said Henry, 24.

Henry earned both her bachelor’s and master’s degrees from IUPUI within four years. In college she served as a senator in the Bachelor of Social Work Student Association. The club helps future social workers expand their skills and make connections in the community. In her role as senator, Henry served as an advocate for justice.

At IU Health she continues to be a champion for the cause.

“Living with Sickle cell anemia as an adult can be very tumultuous. Sickle cell anemia affects the whole body and can cause a cascade of issues. Working with your healthcare provider to develop an individual treatment plan is paramount in navigating the diagnosis,” said Henry, who lives with a disease that can flare up over weather conditions or stressful situations.

Her personal experiences have created a role for her to focus on advocating and providing hope for others diagnosed with Sickle cell anemia.

“During adolescence, when sick and when a hospital visit was needed, most of my care was in the ER. The ability to build rapport with the pediatric social worker did not come frequently. Once my family did have a chance, we learned what resources were available, and how to get the care I needed,” she said.

“Advocacy as a healthcare provider means making sure patients have a comprehensive treatment plan that is unique to them.”

At IU Health, a team of hematologists and oncologists work with patients living with Sickle cell disease. “The mission is to provide excellent, personalized, lifespan comprehensive care for all patients living with Sickle cell disease,” said IU Health Dr. Andrew Ross Wickman O’Brien, director of the adult Sickle Cell Disease Program. IU Health is a member of the newly formed National Alliance of Sickle Cell Centers, an organization committed to providing support to hospitals and disease centers offering comprehensive patient care.

“We are working with other leaders in sickle cell care across the country to set best practices for sickle cell care. This includes providing not only excellent medical care, but also access to mental health services, social work, and cutting edge research,” said Dr. O’Brien. “We also see it as essential to our role to provide education for patients, families, medical professionals, and communities as a whole as well as advocate for increased funding for sickle cell disease care and research.”

For Henry, feeling well means finding joy through traveling, learning to crochet, and spending time with family.

“When in pain or prolonged crisis it can be easy to forget how rewarding life is, but I want those living with Sickle cell anemia to realize life can be fulfilling and there’s hope on the other side.”

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Andrew R. O'Brien, MD

Hematology - Oncology

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