Three journeys – among so many – lives transformed by one of the world’s rarest diseases
When atypical Hemolytic Uremic Syndrome strikes, life changes in an instant. This ultra-rare disease, affecting just a handful of people per million, causes the immune system to turn against the body, destroying blood cells and potentially leading to acute kidney failure and damage to other vital organs. Here we highlight stories of three remarkable individuals who have not only survived aHUS—they’ve transformed their ordeals into positive forces for change.
Scott Cowan: From Coma to Clarity in the Courtroom
Ten years ago, Scott Cowan’s body simply shut down. Without warning, his kidneys failed, he suffered a seizure, and he slipped into a month-long coma. When he finally woke, the world felt fundamentally different.
The diagnosis—atypical HUS—explained what had happened, but not how to move forward. The recovery ahead would be brutal: two years of rehabilitation, learning to trust his body again, rebuilding his strength piece by piece.
For Cowan, a prominent figure in African legal circles, the experience stripped away certainty and ego. It forced a reckoning with what truly mattered. Yet paradoxically, this vulnerability became his greatest strength.
He emerged with a transformed perspective that would reshape not just his life but his professional legacy. Over the past decade, he’s built Africa Legal into a respected platform connecting legal professionals across the continent, guided by the same principles that got him through recovery: truth, humility, discipline, and an unwavering commitment to keep moving forward.
“Where my body once failed me without explanation, I had to learn to trust my own judgment again,” Scott shares. “That journey revealed itself as a kind of superpower—knowing that nothing stands above your own integrity.”
His business philosophy mirrors his personal recovery: stay grounded when others destabilize you, maintain your moral compass, and never sacrifice justice for expediency. Recently, connecting with another aHUS survivor helped him finally accept his diagnosis after a decade of resistance—and recognize that his survival equips him to support others facing similar darkness.
Deborah Haynes: Reporting from the Front Lines of Resilience
Deborah Haynes was on holiday when aHUS struck for the second time. The Sky News Security and Defence Editor, known for her fearless reporting from war zones, found herself battling an enemy within her own body—and in one of the remotest corners of the British Isles.
On the tiny island of Sark, with no vehicles and limited medical facilities, what began as queasiness quickly spiraled into a life-threatening crisis. Her kidneys were failing. Her blood cells were being destroyed. But Haynes had learned from her first aHUS attack in 2017: early diagnosis meant everything.
What followed was an extraordinary rescue: a tractor-pulled ambulance cart operated by volunteer first responders, a marine ambulance service, and a coordinated effort that transported her from the middle of the English Channel to intensive care at London’s University College Hospital in just over 11 hours.
The speed saved her life. Treatment with eculizumab—a specialized drug that stops the immune system’s attack—combined with blood transfusions and dialysis, pulled her back from the brink. After two weeks in hospital, including one in intensive care, she walked out determined to raise awareness.
For someone who has reported from Iraq, Afghanistan, and Libya, covering humanity’s darkest conflicts, the battle against aHUS offered a different kind of perspective. “I’ve seen resilience in war zones,” she reflects. “But surviving this taught me that the fiercest battles are often the ones we fight within ourselves.”
Today, Haynes continues her groundbreaking journalism, breaking major stories about defense and security. Her experience hasn’t slowed her down—it’s sharpened her focus and deepened her empathy for those facing their own unseen struggles.
Kamal D Shah: Building Hope from Dialysis Challenges
Twenty-seven years ago in India, Kamal Shah’s kidneys failed. His diagnosis: atypical HUS. Without access to the specialized treatment that could control his condition, dialysis became his lifeline—not just for months, but for decades.
Most people would have retreated into survival mode. Kamal built a meaning-filled life and business empire.
Drawing from his own experiences navigating India’s healthcare system, he recognized a glaring gap: quality, patient-centered dialysis care simply didn’t exist. In 2009, alongside co-founder Vikram Vuppala, he launched NephroPlus. Today, it stands as Asia’s largest dialysis network, operating over 500 centers across four nations.
But Kamal’s journey hasn’t been without profound setbacks. An unsuccessful kidney transplant deepened his understanding of both the medical and emotional complexities patients face. He even survived the catastrophic 2004 Indian Ocean tsunami—a brush with mortality that only strengthened his resolve.
Through it all, he’s remained on dialysis, turning each session into an opportunity to work, write, and advocate. His book “Silver Lining: Overcoming Adversity to Build NephroPlus” chronicles this remarkable journey. Among his advocacy efforts, Kamal has: founded Atypical HUS India, co-authored KDIGO articles about dialysis issues, spoke via video at the inaugural United Nations NGO committee for Rare Diseases, and was instrumental in organizing India’s annual Dialysis Olympiad launched in 2015, where 350 participants demonstrated that chronic illness doesn’t define capability.
A global advocate as founding trustee for aHUS Alliance Global Action and active with the aHUS Community Advisory Board, Kamal remains a leader in strengthening opportunities to expand treatment options for aHUS patients in India and around the world. As he has reflected,”Being on dialysis taught me that limitations exist only in the mind.” Kamal continues to prove daily that despite a chronic illness people can build a full, rewarding life.
The Phoenix Within Us All
These three stories share a common thread: the refusal to let aHUS define the boundaries of possibility. Scott leads with integrity forged through vulnerability. Deborah reports from the world’s most dangerous places, knowing her greatest threat once came from within. Kamal continues to build a thriving business, and works to promote better patient outcomes and healthcare access while undergoing dialysis until kidney transplant options expand for people like him.
Their message resonates beyond the aHUS community: we all face moments when systems fail, when our bodies betray us, when certainty crumbles. In those moments, we discover what we’re truly made of.
The phoenix doesn’t rise despite the ashes—it rises because of them. The fire that destroys also transforms, leaving behind something stronger, clearer, more purposeful.
Whether facing a rare disease, personal crisis, or seemingly insurmountable challenge, each of us carries this potential. The path forward begins with one choice: to rebuild. To keep moving. To believe that meaning can be forged from even the darkest experiences.
As Kamal, Scott, and Deborah prove daily, acknowledging our struggles doesn’t diminish our strength—it deepens it. The ashes of adversity can become the foundation for something extraordinary.
The question for aHUS patients and their families isn’t whether challenges will occur. It’s what they arise to and build when those challenges come.
aHUS Awareness Day is observed annually on September 24th. An initiative of aHUS Alliance Global Action, the 24 Sept campaign’s tagline is ‘Rising above aHUS’ with its symbol a red balloon. FMI & resources, click HERE or view the annual aHUS Awareness Day campaign on X @aHUS24Sept.
Kamal D Shaw’s book ‘Silver Lining’ is available on Amazon. Watch the NephroPlus video “Beyond the Illusion: Unravelling the Puzzle of aHUS” hosted by Kamal Shah with speakers: Prof. Vivekanand Jha | Prof. Arvind Bagga | Dr. Nicole Isbel.
Scott Cowan – Visit the ‘Africa Legal’ website to learn about the organization and to read Scott Cowan’s article reflecting on his aHUS journey.
Deborah Haynes’ aHUS experience was highlighted by Sky News in this article, and a Sky News interview on aHUS Awareness Day (24 Sept) 2025 featuring Deborah Haynes, Professor Marie Scully, and Dr Jim Downs.
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