Uncertain Suffering (2009)
In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence. Learn more and buy the book on Amazon.
Managing Sickle Cell Disease: In Low-Income Families (2003)
Shirley A. Hill examines how low-income African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family’s health care. Learn more and purchase the book on Amazon.
Backdoor to Eugenics (2003)
Considered a classic in the field, Troy Duster’s Backdoor to Eugenics was a groundbreaking book that grappled with the social and political implications of the new genetic technologies. Completely updated and revised, this work will be welcomed back into print as we struggle to understand the pros and cons of prenatal detection of birth defects; gene therapies; growth hormones; and substitute genetic answers to problems linked with such groups as Jews, Scandanavians, Native American, Arabs and African Americans. Duster’s book has never been more timely. Learn more and purchase the book on Amazon.
People’s Science: Bodies and Rights on the Stem Cell Frontier (2013)
People’s Science uncovers the tension between scientific innovation and social equality, taking the reader inside California’s 2004 stem cell initiative, the first of many state referenda on scientific research, to consider the lives it has affected.
Body & Soul: The Black Panther Party and the Fight against Medical Discrimination (2013)
Author: Alondra Nelson
Alondra Nelson deftly recovers an indispensable but lesser-known aspect of the organization’s broader struggle for social justice: health care.
The Social Life of DNA (2016)
Authors: Alondra Nelson
In The Social Life of DNA, Nelson explains how cutting-edge DNA-based techniques are being used in myriad ways, including grappling with the unfinished business of slavery: to foster reconciliation, to establish ties with African ancestral homelands, to rethink and sometimes alter citizenship, and to make legal claims for slavery reparations specifically based on ancestry.
Genetics and Global Public Health: Sickle Cell and Thalassaemia (2012)
Authors: Simon M. Dyson & Karl Atkin
Genetics and Global Public Health presents a new concluding chapter which highlights the critical nature of social science research for sickle cell and thalassaemia communities, providing key insights into the social contexts of human behaviour and analysing how societal arrangements could change to assist people living with either condition.
In the Blood: Sickle Cell Anemia and the Politics of Race (1998)
Author: Melbourne Tapper
In the Blood argues that ever since the discovery in 1910 and subsequent scientific analysis of the disease, sickle cell anemia has been manipulated to serve social ends-as a tool for securing white identity and a way to establish a hierarchy based on European heritage.
The Enculturated Gene: Sickle Cell Health Politics and Biological Difference in West Africa (2011)
Author: Duana Wiley
The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined – and obscured – the nature of this illness in Senegal today.
The Troubled Dream of Genetic Medicine (2008)
Authors: Keith Wailco & Stephen Pemberton
In this captivating account, historians Keith Wailoo and Stephen Pemberton reveal how Tay-Sachs, cystic fibrosis, and sickle cell disease―fraught with ethnic and racial meanings for many Americans―became objects of biological fascination and crucibles of social debate.
Dying in a City of Blues: Sickle Cell Anemia and the Politics of Race and Health (2001)
Author: Keith Wailoo
This groundbreaking book chronicles the history of sickle cell anemia in the United States, tracing its transformation from an “invisible” malady to a powerful, yet contested, cultural symbol of African American pain and suffering.
Indicators of an Emergency Situation
Patients and families should watch for the following conditions that need an urgent medical evaluation:
• Fever of 101° F or higher
• Chest pain
• Shortness of breath
• Increasing tiredness
• Abdominal swelling
• Unusual headache
• Any sudden weakness or loss of feeling
• Pain that will not go away with home treatment
• Priapism (painful erection that will not go down)
• Sudden vision change
City spotlights
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