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Sickle cell disease is complex on its own, but black men with the illness battle its stigmas and stereotypes too
Doctors didn’t expect Marqus Valentine to live past age 5. The prognosis was so certain that the Valentine family was granted a free trip to Universal Studios to the set of “The Ghostbusters” from a foundation as a dying wish.
Although Valentine beat those odds, his troubles didn’t stop. Diagnosed with sickle cell disease as a baby, he repeated kindergarten because of missing a lot of school due to lengthy hospitalizations and even had a stroke in fourth grade during class, he said.
Growing up during the height of the AIDS epidemic, his classmates didn’t want to play with him because they thought Valentine was contagious. Invitations to birthday parties stopped, and as he got older, he spent the rest of his childhood years receiving monthly blood transfusions, as well as other treatments.
“My peers, no one understood sickle cell,” said Valentine.
The disease is complex physiologically, manifesting itself differently in every carrier, but also sociologically, bringing in factors like racial bias, since sickle cell is believed to be most common among minority groups, particularly African Americans. Historically, there has been limited funding and research dedicated to sickle cell disease, evidenced by only one FDA-approved drug available to the community until last month. The landscape for adults who have sickle cell is much harder than that for children with the illness, and black men specifically may have a harder time dealing with the condition because of existing stereotypes preceding them. A lack of resources for a disease that primarily affects a marginalized community, coupled with negative perceptions of African American males, can exacerbate the navigation of an already complicated, painful disease.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.