The Sickle Cell Podcast

Sickle Cell + Harvard Student (Feat. Hanif Mouehla) Nov 20, 2024

In this episode, we dive into the inspiring story of Hanif Mouehla, a Harvard student and former sickle cell warrior. Hanif shares his journey of growing up with sickle cell disease, from the challenges he faced in his youth to the curative treatment that changed his life.

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Sickle Cell + Aging (Feat. Ms. Pat McGill & Linda Wade) Sep 25, 2024

In this episode, we explore the journey of aging with sickle cell disease through the inspiring stories of 80-year-old Ms. Pat McGill and Linda Wade. Ms. Pat shares her decades-long experience living with sickle cell, providing invaluable insight into the challenges and triumphs of aging with the condition. Linda Wade, founder of the Mark Thomas Foundation and caregiver to her late husband who had sickle cell, joins the conversation to discuss her role in supporting the sickle cell community and her personal journey of advocacy.

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2023 SCAY Award Winners: Advocate of the Year + Digital Advocate of the Year (Feat. La'Shardae and Faith Adejei-Sarpong) - Pt. 2 Jun 06, 2024

Join host Maia Garrison as she speaks with passionate advocates shining a light on sickle cell disease. La'Shardae Scott, the 2022 SCAY Advocate of the Year, discusses her non-profit organization that bridges the gap by transitioning pediatric patients to adult sickle cell care. Faith Adjei-Sarpong, the Digital SCAY Advocate of the Year, shares how she inspires warriors through social media to live life fully despite having sickle cell disease. Prepare to be inspired by their dedication to raising awareness and empowering the sickle cell community.

Find:

La'shardae Scott

Faith Adeji- Sarpong

Instagram:

@faiithooo

@lashardae_scott or @scottcenteroh

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2023 SCAY Award Winners: Community Partner + Youth Advocates of the Year (Feat. Holly John and Ayana Johnson) - Pt. 1 May 24, 2024

Join hosts Cassandra Trimnell and Maia Garrison as they hear from Holly John, Senior Director of Patient Advocacy at Agios Pharmaceuticals, recognized as the SCAY Community Partner of the Year for her groundbreaking work integrating patient voices into drug development and advocacy. Also, meet Ayana Johnson, the SCAY Youth Advocate of the Year, a high schooler who has launched a nonprofit, lobbied for legislation, and engaged with President Biden, inspiring fellow youth warriors. Prepare to be moved by their passion and dedication to revolutionizing sickle cell care.

Find Ayana Johnson

Instagram: _ayana_lee_

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Sickle Cell + Bone Marrow Transplant Dec 18, 2023

Featuring Christina Augustine and Dr. Alexander I. Ngwube, MD, this episode provides an comprehensive exploration on bone marrow transplant (BMT) for sickle cell disease, blending personal experiences with professional expertise.

A huge thank you to Be the Match for Sponsoring this episode. For more information about Be the Match, visit: https://sicklecellconnect.com

---

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Love + Sickle Cell Trait (Feat. Abisola and Seyi Shof) Jul 22, 2022

For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode. Abi talks with special guests Abisola and Seyi Shof, also known as “the Shofs” on social media, about their involvement in the sickle cell community, their love story with SCT, the challenges they had to face with telling their families, and weighing the options for marriage and children that led them to their IVF journey with PGD testing.

Find Abisola and Seyi Shof on

Instagram: @theshofs

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Hot Topic 🔥 Family Planning + "Genetic Incompatibility" Mar 31, 2022

The first of our Hot Topic 🔥 series. Hosts Stephen and Cass have THAT conversation about two individuals wanting to have children but are faced with a chance of having a child with sickle cell disease.

Do you believe people who are "genetically incompatible" (like AS and AS) should have children? Send in your responses to podcast@sc101.org

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2021 SCAY Award Winners + Their Stories, Their Work (Feat. Biba Tinga, Siliana Coelho, and Sarah Masamba) Jan 27, 2022

Cass chats with the 2021 Sickle Cell Advocates of the Year (SCAY) Award recipients about how they got involved and what they’ve achieved. This episode features:

Biba Tinga - Sickle Cell Advocate of the Year
Siliana Coelho - Digital Sickle Cell Community Advocate of the Year
Sarah Masamba - Sickle Cell Healthcare Profession (HCP) Advocate of the Year

A big thank you to our partner AllStripes!

Visit https://sc101.org/SCAY to connect and learn more about the SCAY Award winners.

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Sickle Cell + Caregiver Nov 18, 2021

Caregiving for sickle cell is underrated... Celebrating National Family Caregiver's Month, it's just Stephen and Cass this episode talking about what caregiving for sickle cell looks like – even caregiving from abroad. There is mild humor sprinkled in too. 😬

A HUGE THANK YOU TO OUR SPONSOR: Sickle Cell Speaks

#SickleCellSpeaks is people sharing their stories and strengths living with sickle cell. #SickleCellSpeaks talks about navigating the situations and feelings people with sickle cell face. Visit sicklecellspeaks.com to learn more.

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Sickle Cell + The Workplace (Feat. Tayo Rockson, MBA) Nov 04, 2021

Hosts Dr. Stephen Boateng and Cass Trimnell talk to workplace diversity and inclusion expert Tayo Rockson, MBA about discuss tips, accommodations, and how to navigate the workplace when living with sickle cell disease.

Find Tayo Rockson on

Instagram: https://www.instagram.com/tayorockson
Website: https://tayorockson.com
Podcast: https://podcasts.apple.com/us/podcast/as-told-by-nomads/id910739730

A HUGE THANK YOU TO OUR SPONSOR: Hemanext

Hemanext partners with groups like Sickle Cell 101 on resources and tools for sickle cell patients. Safer transfusions, healthier patients, that’s their mission. Visit hemanext.com to learn more about the company.

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Sickle Cell + A Mental Health Discussion (Feat. Dr. Jonathan Lassiter, PhD) Jun 24, 2021

Dr. Jonathan Lassiter is a clinical psychologist living with sickle cell disease. Listen to his and guest host Naim Rasul’s gems on managing mental health issues for sickle cell disease.

Personal Website

Talks at the Schomburg

Book: Black LGBT Health in the United States

Twitter: @matjl

Instagram: @jmlassiterphd

Pronouns: he, him, his

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Sickle Cell Trait + RMC - A Kidney Cancer (Feat. Dr. Pavlos Msaouel, MD, PhD) Jun 02, 2021

Did you think Renal Medullary Carcinoma (RMC – a kidney cancer) was a sickle cell trait complication? Listen and learn more about this rare, but aggressive kidney cancer and what signs, symptoms, and precautions to take to stay on top of this issue and your kidney health. Featuring RMC expert Dr. Pavlos Msaouel

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Why Sickle Cell? (Feat. Teonna Woolford) Mar 11, 2021

Girls chat! In honor of Women's History Month, we're talking about women's reproductive health and advocacy with sickle cell advocate Teonna Woolford, founder of SC-RED.

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Sickle Cell + Racial Injustice (Feat. Dr. Ahmar Zaidi, MD) Mar 01, 2021

An important discussion on the racial disparities individuals living with sickle cell disease face within the U.S. healthcare system. This episode features hematologist-oncologist physician and activist Dr. Ahmar Zaidi.

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Getting to Know the Hosts (Why Sickle Cell?) Dec 17, 2020

Happy holidays! Stephen and Cass have a list of questions to ask each other. Tune in to learn more about their personal lives, philosophies on sickle cell, and their deep dark secrets (haha).

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Why Sickle Cell? (Feat. London Knight) Dec 03, 2020

Girl chat! Fashion model and sickle cell warrior London Knight shares how she juggles being a model, advocate and inspiration to others. 💋💃🏽

You can follow London Knight on Instagram at @LondonKnight_

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Why Sickle Cell? (Feat. The B Strong Group) Nov 12, 2020

Sponsored by bluebird bio– A mother's perspective on raising her son diagnosed with sickle cell SC disease. This episode addresses the blessings and the hardships Brenda Greene has experienced as a caregiver. We also discuss discovering their genotypes, tips for newly diagnosed families, and nonprofit organization The B Strong Group's work with blood donation.

We would like to thank our sponsor bluebird bio. Check out a new website to learn how you can advocate for better sickle cell care. Take some time to check out SparkSickleCellChange.com to learn more and sign up to Be The Spark for Change in Sickle Cell!

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Sickle Cell + Gene Therapy (Feat. Dr. Isaac Odame, MD & Aeon Chintersingh) Oct 30, 2020

Sickle Cell + Gene Therapy: An Honest and Open Discussion About Gene Therapy

This episode features Aeon Chintersingh, an adult who underwent gene therapy to cure sickle cell disease and Dr. Isaac Odame, a specialist and medical director of Hematology/Oncology at SickKids in Toronto.

We discuss fertility, chemotherapy, genotypes, the word 'cure' and much more.

We would like to thank our sponsor Aruvant Sciences, a company focused on developing gene therapies for rare diseases. Aruvant Science has an ongoing clinical trial in sickle cell that is currently enrolling participants. Please go to momentumtrials.com for more information on the clinical trial.

Aruvant neither owns nor controls this platform and does not have editorial control over content or responsibility for any other information provided.

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Why Sickle Cell? (Feat. Halimat Olaniyan) Oct 26, 2020

Dedicated to all the people living with sickle cell disease (SCD) who wanted to grow up to be a doctor to treat others living with SCD. Halimat Olaniyan is living out this dream. We're chatting about her journey as a second-year med student and as an individual living with sickle cell disease.

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Sickle Cell + Taught Me (Sickle Cell Awareness Month 2020) Sep 17, 2020

We're sharing stories, responses and discussing the theme of this year's Sickle Cell Awareness Month, "Sickle Cell Taught Me..."

Current event links:

Black Blood Matters: https://www.wavy.com/news/health/red-cross-black-blood-matters-for-some-with-sickle-cell-anemia/

Sickle Cell Patients Should Have Medical Exemption in the UK: https://sicklecellanemianews.com/2020/08/19/uk-nhs-medical-exemption-petition/

Millions of Americans carry the sickle cell trait, many without knowing it. Could they be at risk for severe Covid-19?: https://www.statnews.com/2020/09/03/millions-carry-sickle-cell-trait-could-they-be-at-risk-for-severe-covid19/

When Actions Speak Louder Than Words — Racism and Sickle Cell Disease: https://www.nejm.org/doi/full/10.1056/NEJMp2022125

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Curing My Sickle Cell Disease and Lupus (Feat. Rhiannon and Scherika Perry) Aug 20, 2020

A 'Why Sickle Cell' episode featuring Rhiannon and her mother Scherika's inspiring journey to cure Rhiannon's sickle cell disease and lupus. An honest look into what it takes to undergo a bone marrow transplant.

A huge thank you to Be the Match for sponsoring this episode. For more information about Be the Match, visit: https://bethematch.org/sicklecell

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Sickle Cell + Managing Pain From Home (Feat. Dr. Julie Kanter, MD) May 13, 2020

Adult hematologist Dr. Julie Kanters talks about managing sickle cell pain at home, especially during the COVID-19 pandemic.

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Sickle Cell + COVID-19 + Mental Health (Feat. Dr. Marsha Treadwell, PhD) Mar 26, 2020

Featuring sickle cell clinical psychologist, Marsha Treadwell, PhD, we're talking about mental health, COVID-19 and tips and tricks to stay level headed and positive during these challenging times.

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Sickle Cell + Physicals Feb 28, 2020

Let's get physicals!! We're back with our first episode of 2020, celebrating Black History Month, testing for sickle cell trait and getting physicals... with a side of cheese. 🧀

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Why Sickle Cell? (Feat. Ade Adeyokunnu, MBA) Aug 22, 2019

Sickle cell disease doesn't stop him. He received his MBA and traveled throughout Asia while doing it.

This 'Why Sickle Cell?' series episode features Ade Adeyokunnu and how he navigates advocacy, higher education and travel.

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Sickle Cell + World Sickle Cell Day Jun 19, 2019

This one's for the 10th anniversary of World Sickle Cell Day. 🎉

Learn facts that you can share with your family and friends for World Sickle Cell Day!

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Sickle Cell + Mental Health (Feat. Dr. Charles Jonassaint, PhD, MHS) May 16, 2019

May is Mental Health Awareness Month. This episode features psychologist and epidemiologist Dr. Charles Jonassaint, PhD, MHS and delves into mental health in sickle cell disease.

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Why Sickle Cell? (Feat. Dr. Oladipo Cole, MD) Mar 21, 2019

What do you get when you're an individual living with sickle cell disease and a physician? You get Dr. Oladipo Cole.

This 'Why Sickle Cell?' series episode features Dr. Cole and how he navigates living with sickle cell disease and being a physician.

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Introducing the 'Why Sickle Cell' series Mar 21, 2019

They say sickle cell chooses you, so we ask experts, patients and everyone in between why they're invested in sickle cell, while learning about their experience with sickle cell.

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Sickle Cell + Blood Transfusion (Feat. Dr. Keith Quirolo, MD) Feb 22, 2019

Talking with guest Dr. Q all about blood transfusions - types, benefits and risks, hydroxyurea, alternatives and more. Definitely for the nerds! 🤓

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Sickle Cell + Mistreatment Jan 31, 2019

Talking about the mistreatment we endure in healthcare settings.

Articles:

• ‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside - https://www.statnews.com/2017/09/18/sickle-cell-pain-treatment/

• Sickle cell patients face a ‘fight for everything’ — even attention - https://usat.ly/2EGKz8J

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Sickle Cell + Trait Sep 10, 2018

Happy Sickle Cell Awareness Month! Stephen nerds out on everything sickle cell trait, hence the length of the episode. This episode delivers our usual cheese, so enjoy! :) --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

Sickle Cell + History Aug 17, 2018

Celebrating sickle cell greats like King Tut, Walter Clement Noel and more. --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

Sickle Cell Today Jun 19, 2018

A sickle cell warrior and a pharmacist with sickle cell trait chatting about the current state of sickle cell and looking to the future. Also featuring a Warrior Story about overcoming priapism. Bear with our cheesiness, it our first episode! Stephen's WSCD piece: https://bit.ly/2I0eie3 Friends? Sickle Cell 101's Social Media -Facebook: Sickle Cell 101 -Instagram: @sicklecell101 -Twitter: @sicklecell101 Subscribe to get alerts on new episodes! --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

The Sickle Cell Podcast Promo Mar 07, 2018

Sickle Cell 101's educational podcast with sickle cell related topics. If you have any sickle cell related questions for the show, please send them in to ask@sc101.org --- Support this podcast: https://podcasters.spotify.com/pod/show/thesicklecellpodcast/support

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