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Patients, health professionals observe World Sickle Cell Day

STACY M. BROWN | 7/4/2018, 2:23 p.m.
It’s been 100 years since sickle cell disease, a hereditary blood disorder, was first discovered. And, it’s no secret that ...
KC Morse (left) and Dr. Biree Andemariam say that more work needs to be done to empower sickle cell disease patients and to increase awareness about in the medical community. NNPA

(NNPA) – It’s been 100 years since sickle cell disease, a hereditary blood disorder, was first discovered. And, it’s no secret that an alarming number of children and adolescence have died, and the condition remained in the province of pediatrics, according to health experts.

Known as “the silent killer,” SCD is one of the most common genetic disorders in the United States where about 100,000 citizens currently live with the disease.

With June 19 deemed World Sickle Cell Day, researchers said approximately 270,000 babies worldwide are born each year with sickle cell disease.

With one in 365 African American babies born with SCD and one in 13 born with the trait, Black people are disproportionately affected by the disease, which also primarily affects those of Latin American, Indian, Mediterranean and Middle Eastern descent.

Actress and director KC Morse, one of the many African Americans living with SCD, recalled her first major pain crisis, where she didn’t have the support of her loved ones.

Morse said that she was attending college in Allentown, Pennsylvania, while her parents were three hours away in Connecticut on a late Saturday night, when she returned to her dorm room and began experiencing the excruciating pain known to just about every SCD patient.

“It was my first experience on my own outside of my comfort zone,” said Morse, now 25. “When it happened, I was really afraid to call anyone. It was 2 a.m. and I felt alone, and I wasn’t sure about calling an ambulance or campus safety because I wasn’t sure they’d understand.”

Like so many others battling the disease, Morse said she often has to give way to the limitations imposed by SCD.

“One of my biggest challenges is that I’ve always been a very busy person. I studied in school theater and we’ve had exhausting rehearsals until 11 p.m. and there was homework and I joined a sorority,” she said. “I loved being busy, but I had to realize that I had to slow down because I needed rest because exhaustion triggers attacks and crisis.”

Morse said things were a little different in high school, where students go home after school and are afforded the opportunity to rest and hit the reset button.

“In college, you’re on your own and creating your own schedule and I realized that I wasn’t given myself time to rest and recuperate,” she said. “It took a long time to realize that I can’t do that, and I have to know when to say ‘no’ to things and I had to realize that keeping hydrated is a key and when you’re very busy, water isn’t something you think about, but it affects me. Most of my severe attacks were, because of dehydration.”

Dr. Biree Andemariam, a noted hematologist, associate professor of medicine at the University of Connecticut Health Center, and founder and director of the adult sickle cell center at the New England Sickle Cell Institute, said Morse’s experience and reaction isn’t uncommon.

However, she said the tide is slowly beginning to turn as more people become aware of SCD.