As our understanding of APOL1-Mediated Kidney Disease (AMKD) grows, so does the need for greater awareness. National APOL1-Mediated Kidney Disease (AMKD) Awareness Day is observed annually on the last Tuesday of April.

In this episode of Kidney Transplant Conversations, we share an inspiring story of resilience, advocacy, and hope. Sharron Rouse opens up about her personal journey with kidney disease — a journey that began with a diagnosis of lupus nephritis, only to later discover she was actually battling FSGS (focal segmental glomerulosclerosis), a condition sometimes linked to the APOL1 gene variant that is found in around 35% of people of African ancestry.

In a heartfelt conversation with host Rolf Taylor, Sharron discusses the shock of her diagnosis, the challenges of navigating unclear answers, and the life-changing gift of a kidney transplant from her sister.

As the founder of Kindness for Kidneys International, Sharron is now a tireless advocate, raising awareness about the genetic factors influencing kidney health. She emphasizes the importance of early diagnosis, the critical role of research into APOL1-related kidney disease, and the urgent need for greater awareness in communities of African descent.

Tune in to hear how Sharron’s story offers hope to kidney warriors everywhere, highlights the life-saving potential of genetic testing, and makes a powerful case for early intervention. This episode is both inspiring and a call to action for greater education, early screening, and community empowerment.

Kindness for Kidneys Website: https://www.kindnessforkidneys.org/

APOL1-Mediated Kidney Disease (AMKD) Awareness Day: https://www.kidneyfund.org/amkd-day-proclamation

Should I get tested for the APOL1 gene? https://www.kidney.org/kidney-topics/apol1-mediated-kidney-disease-amkd

(c) Project Advocacy 2025

In part 2 of our discussions with Liz, Grace & Shelley, we invite our guests to reflect on six specific questions about their experiences of giving and receiving, and the world of kidney donation.

1. One thing that has been most wonderful about this experience 2. One thing that has been most surprising 3. One thing that has been really difficult 4. One way that you have changed personally because of this experience 5. One thing you wish you could change (magic wand question) 6. One call to action for listeners.

We delve into the remarkable stories of how Shelley, Liz, and Grace were connected through the life-saving act of kidney donation. Shelley, a special education teacher in Portland, Oregon, shares her journey of seamlessly becoming a donor, while Liz, a transplant recipient from Chicago, recounts her renewed zest for life and the accountability inspired by her "kidney sisters." Grace, a hospice nurse from the small island of Kauai, reflects on the joy and challenges of living far from her recipient and the emotional impact of reading a heartfelt letter of gratitude.

Through candid conversations, these women discuss the surprising ease of the donation process, the profound relationships formed, and the ripple effects of their decisions. They also highlight the struggles of shifting societal perceptions of organ donation and emphasize the importance of becoming advocates for this life-changing cause. Tune in to hear about their transformative experiences and the shared mission of encouraging others to consider donation, making a lasting impact on the lives of many in need.

(c) Project Advocacy 2024

S2 E5. Giving thanks for kindness, science and cooperation during Thanksgiving week. A kidney paired donation story. Liz, Grace & Shelley - Part 1

What if you saw a billboard asking for a volunteer to donate a kidney and “share your spare” to save someone’s life? What if it just made immediate sense to you, and you found yourself saying yes? Meanwhile, Liz was in urgent need of a kidney transplant. She had been unwell as a child and her kidneys had failed, just as the first kidney transplants were being pioneered.

Now, 40 years later, Liz needed a new transplant. Her cousin, Grace, had volunteered to donate, and was figuring out how to make this happen from her remote location 5,000 miles away – on the Pacific Island of Kauai. Grace wasn’t a good match for Liz, but a great match for someone else. And Shelley was a near-perfect match for Liz. Somehow, they needed to plan an exchange and give Liz her best possible future health.

Today’s episode is a reunion for three people whose lives intersected in a beautiful and remarkable way. Grace, Liz, and Shelley share their stories and perspectives, and pull back the curtain on the incredible benefits of living kidney paired donation (KPD) and the important role of vouchers.

Shelley, a special education teacher from Portland, takes us through her decision-making process to become a kidney donor after seeing a billboard advertisement, including the role played by the National Kidney Registry in her journey. Liz, a four-time transplant recipient and a patient healthcare entrepreneur from Chicago, discusses her life-changing moments associated with her transplants, starting from the age of 11. Grace, a hospice nurse from the Hawaiian Islands, reveals the emotional moments leading up to her decision to donate a kidney and the challenges faced due to her geographic location.

The episode further explores the scientific advancements in kidney transplants, the impact of living donations, and the importance of organizations like the National Kidney Registry in facilitating these life-saving processes. The National Kidney Registry is one of the world’s leading kidney exchange organizations. Please visit https://www.kidneyregistry.com/ for more information.

And tune in to Part 2 next time, where the trio reflect on their experiences, and comment on what could be improved in the world of kidney transplants, and why more people should step forward to donate.

© Project Advocacy 2024