Podcast

Listen in to the Sickle Cell Podcast

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!

Season 2

Season 2, 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. 

 Season 2 of the Sickle Cell podcast journey is co-hosted by myself, Nikki Akparewa and Karim Assalaam.  In season two of the Sickle Cell Podcast Journey, we will continue to explore the lived experiences of our guests as they share moments that they will never forget that have resonated with them in their journey.  We will continue to highlight their stories to expose racial bias in the U.S. healthcare system to create stronger advocacy and alliance with people with SCD.  Please subscribe to the podcast @ www.diversityandinclusioncoach.com  as well as www.mssctf.org to keep listening as our guests share their perspective, pain points and journey.

Season 2, Episode 2

This week our host’s  Nikki Akparewa and Karim Assalaam are discussing with Mariam Lawal.

A dynamic bi-coastal woman living with Sickle Cell Disease; Mariam Lawal discusses her personal experiences navigating the healthcare system.

Topics:

  • Highs and Lows
  • Spectrum of pain crisis and healthcare providers
  • Conundrum of pain and composure as a black individual
  • Implicit bias in healthcare system study
 

They should create a sickle cell pain simulator, if half these doctors understood the pain we’re in, they would not treat us the way they treat us.”

Social Entrepreneurship is about creating social responsibility so that our collective actions benefit the whole of society by acknowledging how our individual stories and actions can create more equity and inclusion

Season 2, Episode 3

This week our host’s  Nikki Akparewa and Karim Assalaam are discussing with Isolynn (Ice) Dean.

A small business owner, sickle cell transition advocate, and now farmer; Ice talks about her work in the black and sickle community, introduction to SD, alternate career paths, and her journey in social entrepreneurship.

Topics:

  • Alternative Career paths
  • Community advocacy
  • Social responsibility when selling her business
  • Personal experience with SCD
 

“Find that thing that works for you, if it takes some time that’s ok, but just keep moving yourself forward.”

Social Entrepreneurship is about creating social responsibility so that our collective actions benefit the whole of society by acknowledging how our individual stories and actions can create more equity and inclusion.

Season 2, Episode 4

This week our host’s  Nikki Akparewa and Karim Assalaam are discussing with Dr. Cliff Takemoto.

As a pediatric hematologist provider at John Hopkins for two decades and now practicing at St. Jude’s Children Research Hospital, Dr. Cliff Takemoto speaks on his 25+ years of care and research involving blood disorders and the improvement of life for individuals with SCD.

Topics:

  • Research and excitement on Gene Therapy
  • Physician, patient, and caregiver relationships
  • Individual SCD threshold
  • Preventative therapies for Adulthood
  • Disparity of funds
  • Economics, availability, quality of life, and Curative Therapies
 

“Everybody who has had complications with SCD, it’s more than just the severe disease. There are other challenges that come along with that, and with every person, there is a different equation. We always have to remember to think about that person and LISTEN.”

Social Entrepreneurship is about creating social responsibility so that our collective actions benefit the whole of society by acknowledging how our individual stories and actions can create more equity and inclusion.

Season 2, Episode 5

This week our host’s  Nikki Akparewa and Karim Assalaam are discussing with Dr.  Stephanie Ibereme.

A first-generation Nigerian faculty member at duke university and cardiology nurse; Dr. Stephanie discusses her Sickle cell research and work in Sierra Leone.

Topics:

  • Improving care quality
  • Hybrid of traditional and biomedical practices to treat SCD
  • Decolonizing research
  • Studies of racial biases
  • Improving healthcare workers’ capacity
  • The cultural impact of SCD management
  • Culture and innovative methods of care in Sierra Leone

 

“As a collective, we will suffer and as a collective, we will WIN.”

 

Season 2, Episode 6

This week our host’s  Nikki Akparewa and Karim Assalaam are discussing with Andre HarrisPhD(c).

A revolutionary 1st-year Ph.D. student at the University of Houston graduate program in Social Work; Andre Harris talks about his focus on health equity and social determinants of health for those with Sickle Cell.

Topics:

  • Personal education journey impacted by secondary acute chest syndrome (synonym) by sickle
  • The initial investment in social work as someone with sickle cell
  • Toxic anti-black ideologies in the healthcare system perpetuated by a European-centered patriarchal society
  • Provider racial bias of pain tolerance and adultifying BIPOC children
  • Derailing legislation to extend Medicaid to those with sickle in Texas
  • SCD patients are being criminalized for being victims of a system they are inherently born into
  • Emergency department and the illogical idea of being drug seekers

 

“I want to have research that will influence policy to show legislatures and others in powerful positions (CMS, NIH, CDC) to understand we have to find the money, time, and compassion to provide for sickle cell patients, chronic disease patients, and rare disease patients to be able to be supported; not only in the medical aspect (drugs and treatments) but also in the social (transportation, education, housing) all of these need to be supplemented and provided for but we are failing sickle patients in this area.

Season 2, Episode 7

This week our host’s Nikki Akparewa and Karim Assalaam are discussing with Dr. Michael DeBaun.

A man of many titles and accolades; Dr. Michael DeBaun shares with us that at the core of his being, is family and community. 

“I’m a grandson, son, husband, father of two, grandfather of one, sibling, and cousin.” “That’s who I am”

Topics:

  • Familial culture to elevate the community as you personally excel
  • Research and treatment of Cognitive impairment due to SCD
  • Navigating Challenges of racial biases and systemic racism as a physician
  • Creating space of inclusion and education for those in Africa and the Diaspora
  • Scientific endeavors in sickle cell worldwide
 

“I’ve had a duo mission, which is to be the best provider and to provide the best service for children and adults with sickle cell disease; and to advance the care of children and adults with sickle cell disease. Not only regionally and nationally, but internationally, in particular back to the continent of Africa.”

Season 2, Episode 8

This week our host’s Nikki Akparewa and Karim Assalaam are discussing with Ken West.

An honorable Elder in the Puget Sound sickle community; Ken West tells us a little about his work at Seattle Children’s Research Institute and how he strives to be a stepping stone for following generations.

Topics:

  • Alternative ways to manage pain
  • Avascular necrosis and other secondary ailments (synonym to projected) by SCD
  • Staying engaged with Primary Care Providers
  • Importance of Mental and social outlets for those with chronic pain
  • Understanding what it means to have a sickle and everyone checking their biases
 

“Make it further! I’m the stepping stone, you guys are the ones who are going to make it past me and that is really what I am living for.”

“Often we are diminished, they marginalize us; when there are a lot of people out there with sickle cell that is very successful, and that can be any one of us.”

Season 2, Episode 9

This week our host’s Nikki Akparewa and Karim Assalaam are discussing with Kendra Hogenson

A positive light in the community that has overcome health obstacles since birth; Kendra is vulnerable in sharing how she has been impacted by sickle, but more importantly how she has impacted others.

Topics:

  • Varying degrees of physical and emotional pain and how it can be managed
  • Experiencing racial bias as a child
  • Surgery complications and traumatizing misjudgments from providers throughout the years
  • Strategizing on how to seek medical care when having a healthy degree of mistrust
  • Volunteering at blood banks to give back
 

Where does negativity get you?” “There’s a power to positivity, there’s a power to seeing the bright side.”

 

Season 1

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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