The phrase “know your status” is synonymous with one potentially life-threatening disease, but singer Jordin Sparks wants you to be educated about another that also disproportionately affects African-Americans —and she’s working with “Generation S” to lead the conversation.
“Generation S is a group of those who have sickle cell disease sharing their stories and bringing more awareness to what the disease is,” Sparks said at the 46th Annual National Sickle Cell Disease Association of America in Baltimore.
“Obviously you can’t tell by looking at someone if they have it. With this it gives them an opportunity to show their face and say hey look, “I have this, this is my experience and everybody’s experience is different.”
“I think it’s a great release for people who have it to be able to share and know that people are seeing it,” she said.
The Centers for Disease Control and Prevention [CDC] estimates that there are 100,000 people living with the disease in the U.S.
Sickle cell disease occurs in about 1 out of every 16,300 Hispanic-American births and in about 1 out of every 365 African-American births, according to the CDC.
“You would ask someone about their sexual status, so it’s the same thing,” Sparks said about Sickle cell disease.
“It’s something that you should be informed of and aware of. Maybe your partner will have the trait maybe they won’t, but you would want to know that and make a decision based on the facts moving forward.”
“You just want to be informed about those things especially if it’s going to affect your child,” she said.
About four years ago, Sparks encountered the disease when her mother wedded — her step-sister Bryanna at the time was battling sickle cell disease.
Earlier this year, Bryanna died prompting Sparks to educate herself on the disease.
“When she passed I knew I wanted to know more,” she said. “I was amazed at the number of people in my life who one, spoke about it, two, had it or knew that they had it.”
“It’s personal, but it’s a way and effort to educate myself and others.”
— Kiarra Roseburgh (@KIWKIARRA) October 13, 2018
Dr. Biree Andemariam, chief medical officer, Sickle Cell Disease Association of America [SCDAA] expressed vital facts that vulnerable populations to the sickle cell disease should know.
“Sickle cell disease is inherited so if you have it, you were born with it. Most people in this country who have sickle cell disease are African American or of African ancestry,” Dr. Andemariam, a practicing hemotologist at the University of Connecticut said.
“We know that sickle cell disease originated in Africa. Just having the trait or being a carrier, not having the disease, but a carrier actually was an evolutionary advantage. People who inherited the sickle cell trait [not disease] were more likely to survive infection with malaria.”
“And until this day malaria is one of the leading causes of death in children.”
— Kiarra Roseburgh (@KIWKIARRA) October 12, 2018
Dr. Andemariam said that it’s only when two individuals with the sickle cell trait or another type of hemoglobin or red blood cell trait have a child that there is a 1 in 4 chance of having a baby with sickle cell disease.
“Although having the disease more commonly than not foreshortens your life, having the trait is actually an advantage in parts of the world where malaria is prevalent,” she said.
Even if you’re not of African ancestry, doctors and experts say it’s important to know that anybody can carry the sickle cell trait — it doesn’t matter if you’re white, black, latino or asian.
“It’s important to know your status. Know what runs in your family and your potential risk for having a baby with sickle cell disease are,” Dr. Andemariam said.
Beverley Francis-Gibson, president and CEO of SCDAA wants to normalize the conversation about sickle cell disease.
Starting with the social campaign, “Generation S,” in partnership with healthcare company Novartis, those 13 and up are encouraged to share their story via social media.
“One of the impacts of the disease is isolation,” she said. “I think there are many people who feel alone in the struggle to deal with a disease they sometimes don’t understand.”
“I think it’s important for them to know there is help and resources out there for them.”
Francis-Gibson encourages those dealing with the disease, parents and caregivers to seek out their local chapter of SCDAA for resources and also to give back.
“One of the reasons SCDAA is in existence is to advocate for those families and to know they’re not alone,” she said. “Educate yourself as much as you can. Speak to your doctors and find out how much they know.”
“One of the things we’re also learning is sometimes the doctors may not have all of the information they need.”
Dr. Andemariam believes that if there is going to ever be improvement to the care of individuals living with sickle cell disease there has to be more awareness and more advocacy.
“So, that those of us who go to legislators to try to advocate for money, more resources and research dollars — we don’t have to spend the bulk of our time explaining to them what sickle cell is, because other disease states don’t have to take that time.”
For those in the fight for those living with the sickle cell disease there has been many wins over the decades, including growing awareness, with numerous drugs under FDA review and no longer the fear that sickle cell disease is a terminal illness.
“A couple of decades ago, being born with sickle cell disease in the U.S. meant there was a very low chance of surviving into adulthood,” Dr. Andemariam said. “With new ways of caring for babies with sickle cell disease, nearly every child born today with sickle cell disease is expected to live into and well beyond adulthood.”