In our Blood

SEASON TWO

In Our Blood (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.

In Our Blood (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

  • The spectrum of pain crisis and Healthcare providers

  • The 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

In Our Blood (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.

In Our Blood (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.

In Our Blood (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 works in Sierra Leone.

Topics:

  • Improving care quality

  • A 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.”

In Our Blood (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.

In Our Blood (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.”

In Our Blood (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.”

In Our Blood (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.”

Previous

In our Blood