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This Rare Disease Awareness Month, I’m honored to share the extraordinary survival story of writer, performer, and patient advocate Taylor Coffman.

After giving birth to her daughter, Taylor experienced a catastrophic medical crisis now being reconsidered by experts as pregnancy-induced complement-mediated thrombotic microangiopathy — a name that more accurately reflects what happens when childbirth triggers uncontrolled complement activation and widespread clotting.

Historically, cases like Taylor’s were often labeled as “aHUS,” but many clinicians now believe that pregnancy-induced, complement-mediated clotting disorders represent a distinct subtype.
There is no single diagnostic test for this condition.
But there is lifesaving treatment — and early recognition is everything.

Taylor's story could truly help someone else survive.

Within hours of delivery, she developed systemic clotting, went into multi-organ failure, suffered a heart attack, and her kidneys shut down completely. She spent weeks near death in the ICU and required nine months of dialysis — yet she miraculously recovered without a transplant.

One moment she shares is unforgettable: lying in the ICU, convinced the rhythmic clicking of the dialysis machine was repeating, “live or die… live or die.” In that moment, she made the decision to fight.
Today, both she and her baby are alive.

In this episode, Taylor opens up about:
• How childbirth triggered a rare complement-mediated clotting disorder
• Why experts want to rename this condition for better recognition
• The challenges of diagnosing a condition with no definitive test
• ICU trauma, hallucinations, and the mental fight to survive
• Postpartum depression and the emotional reality of medical crisis
• Dialysis, recovery, and the miracle of kidney healing
• Motherhood, disability, identity, and rediscovering purpose
• The one question that helped save her life

Taylor’s journey is one of the most medically extraordinary stories we’ve ever shared on Rare Connection. It also carries a critical message for clinicians: if the name changes, early diagnosis may follow — and more patients could survive.

Content Notes

This episode includes discussion of postpartum depression, ICU trauma, and medical emergencies involving childbirth. Please take care while listening.

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This episode features Candace, who lives with spinal muscular atrophy (SMA), a rare genetic and progressive neuromuscular condition. Diagnosed at 18 months, she shared her early experiences growing up with SMA, including navigating mobility loss and accessibility barriers throughout childhood.

Candace talked about her early career in the entertainment industry and the challenges she faced as a disabled Black woman, eventually choosing to leave the industry for a more stable career in public service. She now serves as the Chief Equity Officer for California’s Department of Rehabilitation.

A lifelong advocate, Candace discussed her work in diversity, equity, inclusion, and accessibility, and the creation of her nonprofit, I Am Abled Inc., which supports young adults with disabilities transitioning into adulthood. She emphasized the importance of representation, community, and listening to patient experiences—especially for those living with progressive conditions like SMA.

Candace also offered advice for families newly diagnosed with SMA, encouraging unconditional love, education, and support while highlighting the need for medical providers to recognize the emotional aspects of disability.

Visit candiswelch.com for more information

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In honor of Rare Disease Awareness Month, this episode of Rare Connection explores one of the most urgent topics facing the rare and ultra-rare community: global access to clinical trials.

Families around the world often discover that the only realistic path to treatment lies outside traditional U.S. research routes. Trials can require millions of dollars before enrollment even begins, leaving many conditions with no way forward. But around the globe, there are regions where early-stage studies can move faster, more affordably, and with greater flexibility — if families know where to look.

Today’s guest, Julio Martínez-Clark, is the CEO of bioaccess®, Synapse Global Theranostics, and amavita Heart and Vascular Health®. He works across Latin America, the Balkans, and Australia to make clinical research possible for rare and ultra-rare conditions that might otherwise be left behind.

In this conversation, Julio breaks down:
• Why global trial sites can launch studies more quickly
• How families and nonprofits can explore international options
• What “trial acceleration” actually means
• Safety considerations and red flags when evaluating overseas opportunities
• How AI and new regulatory models are reshaping access to emerging therapies
• Why international collaboration will play a major role in the future of rare disease treatment

Whether you're navigating a diagnosis with no treatment, advocating for research, or supporting someone with a rare or ultra-rare condition, this episode offers hope, direction, and practical insight into global options many families don't know exist.

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