Neglected and ignored by the medical establishment throughout most of its history, sickle cell disease remains one of the most common (and commonly misunderstood) genetic conditions in the world. In this episode, we break down the myriad effects that one nucleotide substitution can have on the human body and discuss the basics of what it means when blood cells sickle. Continuing with the theme of the seen and unseen, we then turn to the history of sickle cell disease, a history of long-standing injustice and the unending fight to raise awareness and provide support for those impacted by the condition. And as always, we wrap up with a discussion on the current global status of sickle cell disease and some exciting new treatment options on the horizon.
We are so honored and thrilled to be joined this episode by not one, not two, but three incredible guests! You’ll hear first from Marsha Howe and Sharif Tusuubira, who share with us some of their firsthand experiences living with sickle cell disease. And then in our current status section, Dr. Megan Hochstrasser from the Innovative Genomics Institute walks us through the mind-blowing genome editing approaches being used to treat genetic conditions such as sickle cell disease.
You can follow Marsha on her website for her non-profit organization and blog “My Life With Sickle Cell” as well as through her social media channels: Twitter: @MarshaMLWSC, Instagram: @marsha_h181, Facebook: Marsha Howe. And make sure to check out B Positive Choir too! Twitter: @bpositivechoir and Instagram: @bpositivechoir.
Learn more about Sharif Tusuubira’s amazing advocacy efforts on his website and through his social media channels: Twitter: @tkksharif, Instagram: @tkksharif, Facebook: Sharif Kiragga Tusuubira. You can also watch his 2017 talk in Washington, DC as a Mandela Washington Fellow.
And to learn more about the futuristic-sounding research being done at the Innovative Genomics Institute (including using CRISPR to develop a faster, cheaper coronavirus test!), you can follow Megan (@thecrispress) and IGI (@igisci) on Twitter, or head to their website.
| History | Biology |
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| Roberts, Dorothy E. Killing the black body: Race, reproduction, and the meaning of liberty. Vintage, 1999. | Natrajan, Kavita, and Abdullah Kutlar. “Disorders of Hemoglobin Structure: Sickle Cell Anemia and Related Abnormalities.” Williams Hematology, 9e Eds. Kenneth Kaushansky, et al. McGraw-Hill, 2015, https://accessmedicine-mhmedical-com.proxy.cc.uic.edu/content.aspx?bookid=1581§ionid=108061089. |
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| Allison, Anthony C. “Protection afforded by sickle-cell trait against subtertian malarial infection.” British medical journal 1.4857 (1954): 290. | Williams, Thomas N. “Sickle cell disease in sub-Saharan Africa.” Hematology/Oncology Clinics 30.2 (2016): 343-358. |
| Barash, Carol I. “Sickle cell trait, policy and research paradigms.” Science as Culture 7.3 (1998): 379-392. | Ojodu J, Hulihan MM, Pope SN, Grant AM; Centers for Disease Control and Prevention (CDC). Incidence of sickle cell trait–United States, 2010. MMWR Morb Mortal Wkly Rep. 2014;63(49):1155-1158. |
| Desai, Devenkumar V., and Hiren Dhanani. “Sickle cell disease: history and origin.” The internet journal of hematology 1.2 (2004): 1540. | Farooq, Faheem, et al. “Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity.” JAMA Network Open 3.3 (2020): e201737-e201737. |
| Piel, Frédéric B., Martin H. Steinberg, and David C. Rees. “Sickle cell disease.” New England Journal of Medicine 376.16 (2017): 1561-1573. | |
| Steensma, David P., Robert A. Kyle, and Marc A. Shampo. “Walter Clement Noel—first patient described with sickle cell disease.” Mayo Clinic Proceedings. Vol. 85. No. 10. Mayo Foundation, 2010. | |
| Wailoo, Keith. “Sickle cell disease—a history of progress and peril.” N Engl J Med 376.9 (2017): 805-807. |
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