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What Is It Like to Have Sickle Cell Disease?

In their own words, patients and caregivers describe the disease’s emotional toll.


Unless you know someone who has sickle cell disease, you probably don’t understand the full scope of this chronic illness and the emotional impact it has on the men, women and children who have it.

To bring more attention to the patient’s perspective, a group of physicians at The Ohio State University did video interviews with patients -  young and old – to learn how the disease has affected their lives. As a caregiver, former Pittsburgh Steeler Santonio Holmes appears in the video and reflects on how helpless he felt as his then-infant son struggled with sickle-cell-related pain and didn’t sleep all night.

Student Eryn Powell shares how sickle cell disease enters every decision she makes. Will she be able to meet school assignment deadlines? Will her medical bills overwhelm her family?

Physicians, including Dr. Payal Desai who is the director of sickle cell research at The Ohio State University, appear in the video called “More Than Pain.” But the creators made a decision to emphasize patients, not doctors, in the nine-minute piece.

“The dominant voices are the patients and those that suffer from the result of the disease,” said the authors, including Desai, Nicholas Hamilton, Phillip Anjum and Dr. Andrew Schamess.