Sickle cell disease is one of the most commonly inherited blood disorders in the U.S. and one out of every 12 African-Americans carry the trait, yet research for the illness is largely underfunded.
To combat this, the Howard University Center for Sickle Cell Disease and the Howard University Hospital are devoting a series of events aimed at awareness and action during September’s National Sickle Cell Awareness Month.
“The number one admission to Howard University Hospital is complications with sickle cell,” said Johari Abdul-Malik, former researcher and genetic counselor at the HU Center for Sickle Cell Disease and executive director for Faces of Our Children. “One in 12 African-Americans are carriers of the sickle cell trait. Most are healthy carriers, but if two healthy people with this trait are intimate, there then becomes a one in four chance (with every pregnancy) of the couple having a child that suffers from sickle cell.
“With those kind of odds, people would play the lottery every day,” Abdul-Malik said. “Don’t take chances on your life, get tested and know your status early.”
Though most newborns receive mandatory screenings at birth, many doctors will not share details with parents if the child is born healthy, Abdul-Malik said.
“The earlier you get tested and educate yourself about this matter the better,” he said. “There is no cure for the chronic disease. However the best remedy is to educate yourself. Children in school their sickle cell status and people considering marriage should be tested as well before saying I do and that’s what these monthlong events are all about.”
To better help facilitate information and sickle cell testing, a solemn candlelight vigil was held Sept. 8 at Howard University Hospital – Plaza, honoring loved ones who had died from the disease.
The event included dozens of fellow community members and HU hospital professionals, including Miss Black America 2014 Alexandra Morton, who served as a guest speaker and shared her experience of losing someone to the disease.
“I want people to rally and advocate for sickle cell,” Morton said. “Sickle cell patients are often stigmatized and because it appears to affect more people within the African-American community, is thus underfunded and we need a cure. … Anyone with a chronic illness should be able to plan and see the silver lining.
“In our community today there still isn’t a lot of discussion around sickle cell disease,” Morton said. “I lost my mother in 2010 at the age of 50 to the disease and know firsthand how important getting tested is.”
A special sickle cell trait testing program is set to take place Sept. 17 at Howard University’s Rankin Chapel.
The event was organized by Angela Mason, HU’s sickle cell outreach coordinator, who stressed that the hospital also conducts free testing every wednesday from 9 a.m. until noon.
“Sickle cell affects people all over the world and it’s important that we advocate for more research funding,” Mason said.