The article “Stigmas, stereotypes and sickle cell disease” by Christen A. Johnson is highly intriguing and informative in addressing the complexities of sickle cell disease and the ways it disproportionately impacts Black people, and Black men specifically. Johnson discusses the experiences of Marqus Valentine, who was diagnosed with sickle cell as a baby. As a child, Valentine’s peers avoided him due to his condition. Social isolation is one of the ways in which the disease creates emotional hardship as well. When discussing sickle cell disease, it is vital to recognize the impact of race.
The lack of adequate action, research, and treatment for sickle cell disease is undoubtedly a matter of social justice and racism. TaLana Hughes, executive director of Sickle Cell Disease Association of Illinois, discusses how there is no official registry for sickle cell, a significant barrier to measuring the prevalence and impact of this disease. It angered me to learn that the severity of this issue is often diluted by labeling it “a black disease.” As a Palestinain woman, I am very familiar with the ways health and needs of people are dismissed. Palestinian’s face many public health issues: lack of access to healthcare and education, pollutants from chemical weaponry, barriers to transportation due to apartheid and occupation, and high prevalence mental health issues as a result of being exposed to violence. The needs of Palestinians are often dismissed due to the “political complexity” of the military occupation and the dehumanization of Palestinians.
The article also discussed how patients with sickle cell criminalized patients by accusing them of being drug addicts. This is extremely infuriating and demonstrates the blatant lack of empathy and evident racism within the system. Elijah Powell, a 24 year old patient with sickle cell, discusses the stigma of the disease and how it impacts body image. The disease leaves the body depleted and weak, which can be defeating as men face a certain pressure to display strong, masculine bodies. When learning about this, many questions arise for me. How does the struggle of not being able to fit a “masculine” body type impact the emotional well-being of Black men struggling with sickle cell? What mental support is being offered to patients in order to cope with the emotional impact of this disease due to physical hardships and blatant racism?
I am inspired me to learn more about the impact of sickle cell disease on Black communities who face an abundance of overlapping struggles within this complex issue. As a board member of UIC’s Women’s Health Initiative, we focus on how certain health issues disproportionately affect women, specifically Black women and women of color. I am appreciative of the insight this article has provided me on certain health conditions that can disproportionately impact Black men. I am frustrated at this disparity, but empowered to ask- What can I do in order to advocate for increased research and treatment for this disease, as well as support communities?
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