Stephen Agyenim-Boateng, PharmD, RPH, is a medical consultant and board member of the non-profit organization, Sickle Cell 101.

Sickle cell disease is often thought of as mostly afflicting people of African or African-American descent. That is inaccurate. The sickle cell disease population is much more diverse that originally assumed.

If the sickle cell community is going to be categorized at all, a better way of grouping them would be by symptoms and how they respond to treatment. Fortunately, Sickle Cell 101 is collected data to better group and quantify how patients manage their symptoms and treatment in the real world.

As Dr. Agyenim-Boateng states in this video, “All of these different complications that come with sickle cell disease, like acute chest pain and people having problems with their spleen. We have opportunities now to target all these different complications by using different therapies.”

Collecting patient input can also help pharmaceutical companies guide clinical trials and drug development. Dr. Agyenim-Boateng  said Sickle Cell 101 interacts with research – both academic and even non-academic – to make sure the patients’ voices are being heard by those developing the medicines and clinical studies.

Sickle Cell 101 is a global platform to provide educational content and resources for the patient population. They also conduct engagement interactions to better understand patient experiences in the sickle cell community.

Sickle cell disease is a group of genetic blood disorders that alters the red blood cells. People with this condition have abnormal hemoglobin that results in their red blood cells being fragile, sticky and crescent-shaped (i.e., sickle shaped). In addition to the chronic anemia that afflicts these patients, the sickle-shaped cells often get stuck in smaller vessels and that can lead to a plethora of problems, including pain crises, spleen complications. 

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