HARRISBURG, Pa. — The death of a Central Dauphin High School student has shaken the community.
According to the Dauphin County Coroner's Office, 16-year-old Justin Johnson died of complications of sickle cell disease. Officials told FOX43 the teen also had underlying symptoms of cardiomyopathy.
While the investigation is ongoing, organizations like the Central PA Sickle Cell Council (SCPASCC) are trying to raise awareness of sickle cell disease.
“Those who live with SCD often appear healthy, which can lead to serious misunderstandings about their physical capabilities and overall wellness,” said Dwayne Golden, the director of development for South Central PA Sickle Cell Council in a release Tuesday.
According to the Centers for Disease Control, SCD is a group of inherited red blood cell disorders. Red blood cells contain hemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and look like a C-shaped farm tool called a “sickle.”
“The way I would explain it to a five-year-old is that there are some things related to his or her blood that would make them very susceptible to pain or discomfort,” said Golden.
The SCPASCC mission is to use financial, political, and clinical influence to support patients, families and caregivers affected by sickle cell disease through advocacy and increased public awareness. Golden told FOX43 that one way they’re looking to bring more awareness to sickle cell disease is to offer more screenings and implement them in school systems.
“I think instead of having mandatory screening, where our government is spending millions of dollars on that, let's make it a part of our system,” said Golden. “If [the child] has a disease of any type, we’re supposed to bring that to the school so they know how to better care for them but we don’t have screening requirements.”
The CDC states that sickle cell disease occurs more often among people from parts of the world where malaria is or was common. It is believed that people who carry the sickle cell trait are less likely to have severe forms of malaria. However, Golden said there are also certain stigmas attached to the disease.
To learn more about sickle cell disease, click here. To get involved or learn more about resources in your area for sickle cell disease, click here.
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