Episode 113: Sickle Cell Series - “Double Duty: A Doctor's Story of Living with Sickle Cell Disease While Caring for Others”
Aug 21, 2024
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Titilope Fasipe, MD, PhD, is a physician and researcher who lives with sickle cell disease while caring for patients. She shares her powerful journey from childhood to becoming a medical professional. Dr. Fasipe discusses the complexities of managing her own pain as she advocates for her patients, emphasizing the importance of empathy in healthcare. The conversation also touches on improving sickle cell care in emergency departments and the critical shift needed in perceptions about pain management, aiming to foster understanding and trust.
Dr. Fasipe's personal journey with sickle cell disease illustrates the resilience and empathy needed for effective patient care in hematology.
The podcast highlights the significance of validating patient experiences and addressing biases in healthcare for better management of sickle cell disease.
Deep dives
Personal Experience with Sickle Cell Disease
Dr. Titi Lope Fashipe shares her experience of living with sickle cell disease, which began around her first year of life when her family first discovered her condition during a painful crisis. Growing up, she faced recurring pain and fatigue, which became a defining aspect of her childhood. Despite the challenges, her family emphasized a positive attitude, leading her to develop resilience while navigating feelings of being different from her peers. This personal journey shaped her identity and motivated her to pursue a career as a pediatric hematologist, where she could provide empathetic care to children with similar experiences.
Challenges in Healthcare Interactions
Fashipe discusses the challenges of interacting with healthcare providers, noting a shift in perception as patients transition from childhood to adolescence. She explains that while children may receive immediate sympathy for their pain, teenagers often face skepticism and disbelief from medical professionals regarding the validity of their pain experiences. This disconnect can lead to feelings of isolation and frustration, prompting patients to feel the need to prove their suffering. The issue is compounded by societal biases and misconceptions about sickle cell disease, particularly among Black patients, which can affect their healthcare experiences.
The Importance of Advocacy and Communication
Effective communication and advocacy are highlighted as critical components in providing better care for patients with sickle cell disease. Fashipe emphasizes the need for medical professionals to believe and validate patients' pain, rather than resorting to assumptions about drug-seeking behavior. The importance of creating a trusting environment is reinforced, where healthcare providers take the time to understand individual patient experiences and histories. Additionally, the establishment of initiatives like the Emergency Department Sickle Cell Coalition seeks to improve treatment protocols and guide emergency staff in more compassionate and informed care.
Future Directions in Sickle Cell Disease Management
Excitement for emerging treatments, including gene therapy, is balanced with concern over accessibility and equity in sickle cell disease management. Fashipe expresses hope that novel therapies will be available to a broader population, acknowledging the disparities within the healthcare system that may prevent certain individuals from benefiting from new innovations. She advocates for continued efforts in sickle cell advocacy to ensure that medical advancements translate into real-world benefits for patients. Fashipe also emphasizes the importance of preparing young adults with sickle cell for the transition to adult healthcare services, which can differ significantly from pediatric perspectives.
This week, we have an INCREDIBLE episode for you. We welcome Titilope Fasipe, MD, PhD, who not only is the Co-Director of the Sickle Cell and Thalassemia Program at Texas Children’s and an Assistant Professor in the Department of Pediatrics at the Baylor College of Medicine, she herself also has sickle cell disease! Dr. Fasipe takes us through her life story, from childhood to now. Conducting this interview was such an eye-opening experience for us, and we hope that her message resonates with you when you care for your patients with sickle cell disease.
Contents:
- What it is like growing up with sickle cell disease?
- Pearls to ensure that our practice provides excellent care for our patients with SCD