Chwechweechwe: Relentless Perpetual Chewing

Severe pain, which is the most common complication for people living with sickle cell disease (SCD), severely affects their quality of life. This episode starts with a passage about the excruciating pain a person living with SCD endures read by SCD care and research pioneer Dr. Marilyn Hughes Gaston. Host Dr. Wally Smith talks to Kyle Smith, an advocate and SCD warrior, about his many experiences with pain from the disease. Dr. Titilope Fasipe, an SCD provider and an individual living with the disease, discusses how sickle cell is defined in other countries and differences in perception and understanding of SCD in the United States. SCD experts and care providers Dr. Sophie Lanzkron and Dr. JJ Strouse share strategies and guidelines for managing pain crises in the emergency department. Understanding and applying objective guidelines will help clinicians recognize and avoid implicit bias. Learn more by reading through the resources in the list below. 
Relevant resources: 

• ASH Sickle Cell Disease Initiative - https://www.hematology.org/advocacy/sickle-cell-disease-initiative 
• ASH Research Collaborative - https://www.ashresearchcollaborative.org/s/
• ASH SCD Guidelines for Management of Acute and Chronic Pain - https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/scd-guidelines-management-of-acute-and-chronic-pain
• ASH pain management resources: https://www.hematology.org/advocacy/sickle-cell-disease-initiative/pain-management-resources
• Crescent Foundation: A Sickle Cell Initiative - https://www.crescentfoundationscd.org/ 
• NIH Workshop: Approaches to Effective Therapeutic Management of Pain for People With SCD - https://www.nccih.nih.gov/news/events/approaches-to-effective-therapeutic-management-of-pain-for-people-with-sickle-cell-disease
• Article: Pain in Sickle Cell Disease. Rates and Risk Factors - https://pubmed.ncbi.nlm.nih.gov/1710777/
• Book: Dying in the City of the Blues by Keith Wailoo - http://www.keithwailoo.com/dyinginthecity
• Book: The Troubled Dream of Genetic Medicine by Keith Wailoo - http://www.keithwailoo.com/troubleddream

Music: "Envision" Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 4.0 License http://creativecommons.org/licenses/by/4.0/