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: 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.
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.
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
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 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.
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.
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
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
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