Living with Sickle Cell Disease

By Sheann Brandon

Sickle Cell Disease (SCD) is a common yet overlooked genetic disorder, with approximately 300,000 babies worldwide born with the disease each year, according to the World Health Organization.

Although there is a highly diverse patient population in the Inland Empire affected by SCD, there are unique barriers to receiving care in our region. Akshat Jain, MD, MPH, a global sickle cell disease expert, and his team continue to combat those barriers by raising awareness of the disease and treatment options available at Loma Linda University Children’s Hospital.

Comprehensive Sickle Cell Care

In 2017, Jain was invited to Children’s Hospital to set up a center of excellence for sickle cell disease. A program that would take on the care of hundreds of sickle cell and anemia patients in the Inland Empire, and beyond.

“Sickle cell patients were already receiving great care at Children’s Hospital, but it was scattered,” Jain says. “We intended this program to provide full service, comprehensive sickle cell care, not only when patients need intervention for pain and in events of crisis, but to ultimately keep them out of the hospital and keep them as close as possible to a quality of life similar to their peers.”

He explains that by knowing what to look for, such as checking the spleen, some of these life-threatening sickle cell crises can be caught before excruciating pain sets in. As a chronic disease, crises can often be triggered by infection. In children and teenagers, crises can also be impacted by dehydration, temperature changes, and stress from school.

Raising Awareness

Currently, stem cell transplant from bone marrow is the only recognized cure for SCD — a course of curative therapy that Children’s Hospital and Jain’s team have successfully performed more than 10 times.

However, stem cell transplants aren’t without their risks. Jain adds that the recent addition of world expert Hisham Abdel Azim, MD, at the helm of cellular therapy, to the team, will be instrumental in establishing even more lifesaving cures like gene therapy at Children’s Hospital in the coming years.

For other families struggling with SCD, they encourage them to find a support system. And for those unaware of SCD, hope to continue raising awareness, saying education is key to a better standard of care across the country and continued steps to more curative options.

(Courtesy: Loma Linda University Health)

Image courtesy of (Image: LLUH)

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