Just 70 years ago, there were few treatments for hemophilia and the average life expectancy was less than 20 years. Thanks to advancements in treatment, by the 1990s, life expectancy improved to 67 years and the 2000s saw even more progress for the community. Today, scientists – including a team at CSL Behring – are studying the possibility of gene therapies, which could potentially further transform the lives of people with hemophilia.
To bring attention to this remarkable journey, CSL Behring asked Rankin, a British photographer known for his photos of Queen Elizabeth, David Bowie and other famous people, to capture the portraits of hemophilia patients. Through personal stories, archival images, and a timeline of key scientific discoveries, “Portraits of Progress” invites viewers to learn about life with hemophilia and the pace of progress – from the identification of hemophilia A and B in the 1940s to modern day investigations of potential gene therapies.
The photo exhibition features Wayne, shown in the photo above. Born in the early 1960s, Wayne was five years old when he was diagnosed with severe hemophilia. At the time, no one in his family knew what the disease was and after diagnosis his parents were told he likely wouldn’t live past his twentieth birthday.
In 1985, Wayne was introduced to factor therapy and joined the board of a local hemophilia chapter. From there, he made advocacy his life’s mission, working to pass legislation for the community. Today, Wayne, now 61, says he is proof that people with severe hemophilia can live longer, healthier lives. With treatments for the condition continuing to progress, Wayne sees a bright future not only for himself but for his young grandsons, who have hemophilia but are experiencing a childhood very different from his own.
To learn more about Wayne and other patients, visit www.portraitsofprogress.com or visit the exhibit in person at a gallery in New York City from June 11-19 at 89 Crosby Street in Soho.