Episode 43: June 12, 2019 - Sickle Cell Disease: My Story
Living with sickle cell anemia: what I wish my caregivers understood about me—Kelsey Taylor
My name is Kelsey Taylor and I am a 25-year-old college student at Wheaton College, MA studying Film and New Media Studies. I was diagnosed with sickle cell anemia at birth, and since then have been advocating for patients nationwide. While struggling with sickle cell, I had my first pain crisis when I was 5 years old, suffered severe daily pain since age 16, and at 19 I ended up doing a bone marrow transplant in an attempt to cure my disease. I engrafted—meaning new, healthy bone marrow was producing normal cells—but my body rejected the healthy marrow and sickle cell disease returned a month later. Since then, I've focused on advocating and sharing my experience with the disease, including creating a podcast to raise awareness of the patient perspective of not just sickle cell, but many chronic illnesses, diseases, and disabilities. The Pill podcast is a new type of health podcast that interviews young adults who have chronic illness, diseases, and disabilities worldwide.
Host: Dawn Berndt, DNP, RN, CRNI® – INS Infusion Nurse Educator
Guest: Kelsey Taylor
Sickle cell disease is a family of blood disorders that affects the hemoglobin molecule in red blood cells, and impacts approximately 80,000 individuals in the United States. It’s the most common inherited blood disorder in this country, affecting 1 in 500 African Americans and 1 in 1000-1400 Hispanic Americans. In sickle cell disease, the hemoglobin molecules are atypical and change into a crescent—or sickle—shape. Those living with sickle cell disease often experience episodes of severe pain and suffer the effects of anemia, which causes extreme fatigue, shortness of breath and, in children, delayed growth and development. In adults, serious complications may include pulmonary hypertension, a form of high blood pressure that affects the blood vessels that supply the lung.
Podcast guest Kelsey Taylor describes her experiences living with the disease, and explains how she works to advocate for those who experience sickle cell and other chronic conditions.