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Our podcast features tips, resources, and more from sickle cell patients and healthcare providers. Each episode tackles a different topic and how it relates to SCD and its unique challenges. Keep checking back for fresh content or join our mailing list to keep up to date!

Episode 1

Thanks for listening in to the Social Entrepreneurship Now podcast where our guests speak up and out about creating equity, diversity and inclusion in the systems they are in.  This is a special series with the Metropolitan Seattle Sickle Cell Task Force and our sponsors the Rotary Clubs of Ballard, Magnolia Mercer Island and Seattle. 

In this special series we will bring together sickle cell patients and healthcare providers and use SC as a lens to explore racial bias in the U.S. healthcare system. 

Special Guests are: John Masembe and Alix Dassler

Show Highlights:

  • John explains how life rotates between home and school and how life can seem somewhat directionless when you have sickle cell. 
  • John now looks at journey as not a weakness, but as a survivor.  John explores how surviving is about resilience through duress.  He also discusses how sickle cell is a disability.  
  • Alix is a Nurse Practitioner who works with patients with sickle cell at the Odessa Brown Children’s Clinic in Seattle, WA.  She identifies as white and female and wanted the audience to understand why it matters to say this up front.  
  • Alix further explores privilege, racial equity and duality of being white and her patients being black and brown. 

Episode 2

In this episode Alix Dassler and John Masembe discuss race and pain management as it relates to sickle cell disease.  Discussion centered on the lack of training for providers around pain management juxtaposed against the opioid epidemic.  Implicit bias was also touched on as it relates to race and pain management with themes of white providers believing black people have thicker skin and fewer pain receptors.  Stress as a trigger for pain was also discussed and how it can contribute to pain. 

Question explored:  why do patients with sickle cell have to prove that they are in pain? What kinds of strategies do providers teach for patients with SCD to manage pain? Should patients have to be “trained” how to express their pain in a way that does not cause too much attention?  How can we as both providers and patients learn to address race and pain management for patients with SCD?

Episode 3

In this podcast episode we discussed complex health systems and how to identify members of the health care team.  We also discussed how vitally important it is for people with sickle cell disease to have a primary care provider and the reason and why.  We also discussed the importance of the patient and provider developing a care plan.  We briefly discussed transitioning from pediatric to adult practice and ways that patients can keep track of appointments; MyChart is a helpful tracking tool.  Finally, we also discussed clinical navigators role in assisting with care coordination. 

Episode 4

In this episode, our guests discuss the importance of understanding mindfulness and trauma.  The historical trauma of racism is explored as well as the importance of healing as a community.  Listen to the end to participate in the delicious mindful meditation. 

Themes from the conversation where:

  • The imprint left on the soul as you navigate the world as a person of color (the trauma scars)
  • Mindfulness creating a space of acceptance and validity in a world difficult to navigate by chronic illness
  • Recovery happens every day if you allow it
  • How to come home to yourself through mindfulness

Episode 5

In this episode, Alix and John continue with our conversation around sickle cell patient care and specifically regarding COVID and vaccination.  Questions asked are: What do folks want to know about COVID?  What is COVID-19? What are the benefits and risks of the vaccine? 

What we discussed further:

  • Seeking and finding trusted sources of information
  • The toll of social isolation for people with SCD
  • The development of the COVID-19 vaccine and hesitation to get the vaccine

Episode 6

In this episode we discussed how racism in upper management is impacting the care of patients who are living with sickle cell.  This podcast was in response to Dr. Danielson resigning in protest from the Odessa Brown clinic.  

Key points for this podcast where:

  • The level of security being called for people of color is 1.5x more likely to have security called on you
  • The Odessa Brown clinic was at the bottom of the priority list for funding
  • Reaching the executives who control the money to ensure a more diverse representation at the executive level
  • Acting on the data that exposes racist behaviors

Episode 7

Listen to the show with Laelah Ndofin as she shares her story and journey being a young woman living with sickle cell.  Laelah shared perspective on how she initially saw sickle cell disease as a weakness and how that changed when she realized how strong she was, how much she could endure. 

Laelah found her way to through many challenges, including depression, to graduating from Washington State University.  She enjoys being creative and is very much into self-discovery. 

Show Highlights:

  • Take your journey day by day, don’t measure yourself against what others are doing
  • Find your own self-discovery journey

Sickle cell does not have to define you

Episode 8

Welcome back to our series on sickle cell disease and relationships between patients and providers.  In this episode a patient and provider discuss the delicate process of making that transition in care from pediatric to adult; the riskiest time healthwise for patients with sickle.  Hear our guests discuss what should patients do if they don’t receive effective communication, to how to approach overbearing caregivers, to providers need to do to help their patients transition well.  

Show highlights include:

  • how early providers need to have these conversations with families
  • how to respond when caregivers “can’t let go”
  • how to find your voice and speak up to providers when you don’t understand what your next step should be

Episode 9

For all of our listeners who have listened throughout the series you will have learned about perspectives on race, gender, culture bias, pain, transitions and so much more.  In the nooks and crannies of our stories is the heartbeat of change, and that is what you will witness in this season finale.  Our guests speak candidly about how uncomfortable and yet transformative it is to be your true and authentic self as a patient and as a provider.  

Show highlights include:

  • how important it is to be able to discuss stressors, such as mental health
  • how white providers can learn to discuss race with patients of color
  • how cultural brokers can help alleviate miscommunication and help patients open up

Thank you to all of our dedicated listeners and to those just joining, please share your thoughts and comments with us at www.diversityandinclusioncoach.com as well as www.mssctf.org

Episode 10

In this episode, we recount how the process unfolded, how our central figures John Masembe and Alix Dassler, continued to hold those with sickle cell in the light so that they could shine. And, we discuss some high notes from the show, the learning that took place and so much more.

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