The Sickle Cell PodcastMar 26, 2020
Love + Sickle Cell Trait (Feat. Abisola and Seyi Shof)
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
--- Support this podcast: https://anchor.fm/thesicklecellpodcast/support
Hot Topic 🔥 Family Planning + "Genetic Incompatibility"
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 firstname.lastname@example.org
2021 SCAY Award Winners + Their Stories, Their Work (Feat. Biba Tinga, Siliana Coelho, and Sarah Masamba)
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.
Sickle Cell + Caregiver
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.
Sickle Cell + The Workplace (Feat. Tayo Rockson, MBA)
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.
Sickle Cell + A Mental Health Discussion (Feat. Dr. Jonathan Lassiter, PhD)
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.
Pronouns: he, him, his
Sickle Cell Trait + RMC - A Kidney Cancer (Feat. Dr. Pavlos Msaouel, MD, PhD)
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
Why Sickle Cell? (Feat. Teonna Woolford)
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.
Sickle Cell + Racial Injustice (Feat. Dr. Ahmar Zaidi, MD)
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.
Getting to Know the Hosts (Why Sickle Cell?)
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).
Why Sickle Cell? (Feat. London Knight)
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_
Why Sickle Cell? (Feat. The B Strong Group)
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!
Sickle Cell + Gene Therapy (Feat. Dr. Isaac Odame, MD & Aeon Chintersingh)
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.
Why Sickle Cell? (Feat. Halimat Olaniyan)
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.
Sickle Cell + Taught Me (Sickle Cell Awareness Month 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
Curing My Sickle Cell Disease and Lupus (Feat. Rhiannon and Scherika Perry)
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
Sickle Cell + Managing Pain From Home (Feat. Dr. Julie Kanter, MD)
Adult hematologist Dr. Julie Kanters talks about managing sickle cell pain at home, especially during the COVID-19 pandemic.
Sickle Cell + COVID-19 + Mental Health (Feat. Dr. Marsha Treadwell, PhD)
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.
Sickle Cell + Physicals
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. 🧀
Why Sickle Cell? (Feat. Ade Adeyokunnu, MBA)
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.
Sickle Cell + World Sickle Cell Day
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!
Sickle Cell + Mental Health (Feat. Dr. Charles Jonassaint, PhD, MHS)
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.
Why Sickle Cell? (Feat. Dr. Oladipo Cole, MD)
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.
Introducing the 'Why Sickle Cell' series
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.
Sickle Cell + Blood Transfusion (Feat. Dr. Keith Quirolo, MD)
Talking with guest Dr. Q all about blood transfusions - types, benefits and risks, hydroxyurea, alternatives and more. Definitely for the nerds! 🤓
Sickle Cell + Mistreatment
Talking about the mistreatment we endure in healthcare settings.
• ‘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
Sickle Cell + Trait
Stephen nerds out on everything sickle cell trait, hence the length of the episode.
This episode delivers our usual cheese, so enjoy! :)
Sickle Cell + History
Sickle Cell Today
Stephen's WSCD piece: bit.ly/2I0eie3
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