For several weeks, our team here at SAVE JON will be observing Rare Disease Month, an extension of Rare Disease Day. Of course, we hardly need a special occasion to bring attention to this cause – for patients and families struggling with rare diseases, every day of every month is an opportunity to recognize how these conditions impact patients, and drive the action and research that will one day lead to life-saving cures.
In fact, every day here at SAVE JON, we help patients with rare diseases because the next day of life is never guaranteed – there’s no time to waste.
No one’s story illustrates this more than that of Walter Payton: one of the most prolific players in the history of the NFL, and a victim of Primary Sclerosing Cholangitis (PSC).
The Life of Walter Payton
Both avid and casual football fans likely know Walter Payton and his accomplishments well. A nine-time Pro Bowl selection, the longtime Chicago Bears running back once held the NFL records for most career rushing yards, touchdowns, carries, and more. Elected to the Pro Football Hall of Fame in 1993, he was once described by his former coach and SAVE JON advocate, Mike Ditka, as the greatest football player he’d ever seen – but an even greater human being. In fact, Payton’s nickname was “Sweetness,” which many say was based on his friendliness and generosity off the field.
However, all of these accolades and his likable persona could not protect him from the perils of PSC. Diagnosed at age 45 in February of 1999, doctors had initially told him he would need a liver transplant within two years. But before he could even qualify for one, he was also diagnosed with bile duct cancer – which develops in one out of every 10 PSC patients.
He would later receive chemotherapy and radiation treatment, but it was too late – the cancer had already progressed to a point where the liver transplant wouldn’t have done any good.
Just seven months after his initial PSC diagnosis, on November 1, 1999, Payton passed away due to bile duct cancer. Early reports of his passing in the Chicago Tribune noted that his medical team didn’t expect someone known for his physical prowess to fall to the disease so quickly. They thought that if he had been able to get a liver transplant, he would have a much better chance at survival.
Walter Payton’s story shows us how PSC – and other rare diseases – can have a debilitating “ripple effect” on both a person’s health and their family. Payton’s rapid decline and his tragic death were the result of a number of complications and symptoms caused by PSC. And while his demise was shockingly and exceptionally fast, the reality is that many patients can live for several years before needing a liver transplant. This makes finding a cure to save these patients a little more attainable – but the clock is constantly working against us.
Walter Payton’s Legacy
Today, Payton’s name lives on in the football world through its annual Walter Payton Man of the Year Award, named for him following his passing in 1999. Outside of football and the NFL, staff and researchers at the Walter Payton Liver Center at the University of Illinois also carry Payton’s name, by helping to fight the battle against PSC and other liver diseases every day.
The story of Walter Payton underscores how truly urgent our problem really is. PSC has the ability to take a life – anyone’s life – quickly and without warning. Nobody, regardless of fitness level, strength or success, is immune to PSC and other rare diseases. SAVE JON stands with the advocacy groups and researchers who continue to work towards a cure every day. The rush is on.