It’s been 100 years since sickle cell disease (SCD), a hereditary blood disorder, was first discovered.
And, according to health experts, it’s no secret that an alarming number of children and adolescence have died, and the condition remained in the province of pediatrics.
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 Tuesday, 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 told NNPA Newswire 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, Dr. Andemariam said the tide is slowly beginning to turn as more people become aware of SCD.
“The disease is not anything to be ashamed of,” said Dr. Andemariam, who also serves as Chief Medical Officer on the board of directors for the Sickle Cell Disease Association of America.
“Researchers and doctors are really beginning to understand the impact of chronic pain [although] many people living with SCD typically don’t let friends or extended family know about the diagnosis,” she said.
Dr. Andemariam continued: “It’s really important for families to understand that no one did anything wrong and, as far as we can tell, with medical advances people are living longer now.”
Morse said that she plans to launch a new video series on Facebook depicting what it’s like living with SCD, which will appear on the page, “Spotlight on Sickle Cell Disease.”
“I think people need to be aware of SCD and there’s a need to start a national discussion,” Dr. Andemariam said.
Still, Dr. Andemariam added, that there’s a lot more education and advocacy occurring across the country and there’s enhanced education in the medical community.
“The focus today is on the effect of having SCD; on the social and emotional well-being of those living with the disease,” Dr. Andemariam said. “There’s lots of efforts underway to broaden the medical community and empower patients to have the best knowledge and to develop patterns that will ensure they will have access to medical care and finding out who the best physicians are in their community.”
For Morse, who is producing and starring in the upcoming New York stage show, “Tumbleweed,” World Sickle Cell Disease Day, is a time to reflect and count her blessings, she said.
“I try to live my best life and I think somedays are good and somedays are bad. I’ve been very fortunate to have good days and have family and friends who have been extremely supportive,” Morse said. “I can’t imagine having this disease without having people there holding my hand and telling me it’s going to be okay.”