On today’s episode we talk to Dina Steagall whose beloved mother, Merula Steagall, passed away from thalassemia at age 56. Merula started Abrasta and Abrale, the Brazilian non-profit organizations for thalassemia and blood cancers.
About having a mother with thalassemia, Dina quotes, “we have warriors as our role models and we have so much to learn from them…she was my role model…she was an angel in my life…I admire her so much.”
Dina has embraced advocacy and carries on her mother’s legacy with light, love and compassion.
This episode airs in honor of Merula Steagall on her birthday, October 22nd.
Check out Abrale and Abrasta online and follow their social media pages:
https://abrasta.org.br/
https://abrale.org.br/english/
Michelle Campbell invites us into her family’s remarkable story living with thalassemia, a rare genetic disorder affecting her daughter Shelby. Hear about how they navigated the diagnosis, the difficult decisions they made, and how they embraced cutting-edge genetic therapy. Michelle’s heartfelt story demonstrates the incredible advances in medicine, and the strength it takes to face life’s toughest challenges. Tune in for a story of hope, science, and the power of resilience.
On this episode "Understanding Thalassemia 101", we share the essentials of this genetic blood disorder for everyone. From those living with thalassemia, to anyone wanting to understand it better.
Thalassemia affects how the body makes hemoglobin, which can lead to anemia. It’s inherited from both parents, so understanding your genetics is key. Treatments often include regular blood transfusions, but these can cause iron to build up in the body—making iron chelation therapy, which removes the excess, an important part of care.
While thalassemia can have health effects over a lifetime, advances in medicine and ongoing research are helping more people live longer, healthier lives.
This episode gives you the basics so you can share. Simply and clearly—what thalassemia is, why managing it matters, and why there’s hope for the future.
Today, we are talking about resilience with Kostas Tsurlis from Nuremberg, Germany. He is 53 and living with TDT (transfusion-dependent thalassemia). He discusses how the challenges he has faced have built resilience and made him a stronger person by helping others.
In his words: “Over the last three decades, I have been active in thalassemia matters, and I became an expert patient. Over the years, I gained a sound knowledge about thalassemia, which I dedicate to the wealth of our thal ‘family’ by supporting patients and parents, communicating with doctors, and cooperating with pharmaceutical companies. ‘Knowledge doubles when you share it.’”
On this episode of It's in Our Blood:
We are excited to launch our very first episode on International Thalassaemia Day, May 8- a day dedicated to raising awareness and honoring the global thalassaemia community. In this episode, you’ll hear from people living with thalassaemia around the world as they share how the condition has shaped their lives, the lessons they’ve learned , and their hopes for the future. Join us as we amplify patient voices and celebrate their resilience on this important day.
SHOW DESCRIPTION:
It's In Our Blood is a podcast created for the entire thalassemia community—patients, parents, siblings, significant others, friends, healthcare providers, and anyone impacted by or interested in this genetic blood disorder. Our platform is one where people living with thalassemia and those supporting them can share their personal stories, successes, challenges, and questions.
Each episode features authentic voices from patients, caregivers, family members/spouses, providers and others whose lives are touched by thalassemia. Through these personal narratives and expert insights, we aim to foster understanding, support, and connection. Because thalassemia is more than a condition; it’s a shared experience that runs deep— “It’s in Our Blood.”
Whether you are seeking inspiration, practical advice, or simply a place to feel understood, this podcast invites you to listen, learn, and connect with others who truly can relate to the thalassemia journey.
Disclaimer:
The information discussed in the podcast “It’s In Our Blood” is for informational purposes only and does not replace professional medical advice. Always consult a licensed healthcare provider for concerns about your health, diagnosis and treatment.
The podcast producers are not licensed medical professionals. The information shared here is based on personal opinion and personal experience and does not reflect any professional affiliations.
Transparency Statement: It's In Our Blood is a non-profit podcast created and produced by two women living with transfusion dependent beta thalassemia – Kathy Raufi and Laurice Levine. Neither hosts nor guests receive payment for their participation as we do not have sponsors and therefore there is complete transparency and freedom of speech. The views expressed are those of the individuals and do not constitute medical advice.