June 19th is World Sickle Cell Day, and to raise awareness about the condition, Wunmi Bakare and Dima Hendricks are launching a podcast. Both women have experience with sickle cell disease and aim to create a community where others with similar struggles can learn and share.
The #ThroughTheGenes podcast will explore the lived experiences of patients who participated in Gene Therapy and bone marrow transplant, a treatment option for people with sickle cell disease. The podcast also aims to explore gene and cell-based therapies’ risks, benefits, and limitations so people can make informed decisions about their options.
Sickle cell disease is a group of blood disorders that causes abnormal hemoglobin–the protein that circulates oxygen throughout your body. It’s also important to note that it’s an inherited disease. Over 100,000 people in the United States and 20 million globally have sickle cell disease. What’s more, the majority of individuals are of African descent or identify as Black.
Two ways the disease can be treated or cured include procedures like stem cell transplants, bone marrow transplants, or gene editing therapy. With the former, bone marrow affected by sickle cell anemia is replaced by healthier bone marrow from a donor. Gene editing therapy, on the other hand, involves changing the DNA in an individual’s stem cells to enable the cells to make healthy red blood cells. There are also non-evasive options like medicines to help manage the disease.
In December 2023, the Food and Drug Administration approved two gene-editing treatments, Casgevy and Lyfgenia. The podcast is timely, as one of the focus areas is how the treatment option works and the patient’s real-life experiences.
The podcast, funded by the National Human Genome Research Institute, will feature healthcare professionals who are leaders within the sickle cell community so listeners can expect quality information.
#ThroughTheGenes podcast officially launches on June 19th and can be found on YouTube.
