Photographer Rankin Captures The Humanity In People With Hemophilia

People with hemophilia can bleed spontaneously and uncontrollably following an operation or injury. Once known as “the royal disease” because it was pervasive among the royal families of England, Spain, Germany and Russia, this bleeding disorder is no longer considered a death sentence. In fact, scientific breakthroughs in treatment have dramatically improved survival: until the 1960s, life expectancy for those with severe hemophilia was 11 years; today, it’s about 75. A handful of inspirational stories of this tight-knit community of hemophilia survivors was featured in “Portraits of Progress,” a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that showcased the genius of renown portrait photographer, John Rankin.

“I was given this gift of taking pictures and telling stories,” said the British photographer whose portfolio includes The Rolling Stones, David Bowie, Madonna and Queen Elizabeth II.

Rankin has always gravitated towards campaigns that make a difference. “I always want to give back. Once I started [this project], I learned I knew so little about hemophilia.”

According to the CDC, people with hemophilia – a rare bleeding disorder in which blood does not clot properly – have low levels of clotting factor VIII (8) or IX (9). The classification of disease – mild, moderate or severe – depends on how much clotting factor is circulating in a person’s blood. The disease is caused by a mutation in a gene located on the X chromosome which males inherit from their mothers; the Y chromosome comes from their fathers. Females who inherit one copy of a mutated gene are considered “carriers” of hemophilia. But because the X chromosome contains many genes that the Y chromosome doesn’t, mutations in the former can manifest as disease in men. Men like Wayne, whose journey with hemophilia was showcased in “Portraits of Progress.”

“My experience as a child was tough,” reflected the 60-year-old survivor of hemophilia. “I had my first knee replacement at 20 years of age” due to bleeding-induced joint damage. Since then, the proud grandfather who retired from General Electric after 35 years underwent two more total knee replacements and acquired hepatitis C from a contaminated blood product – a result of many transfusions Wayne received to manage his bleeding disorder. Infections such as HIV and hepatitis B and C are some of the hazards of hemophilia, with which hematologists are all too familiar.

“Hemophilia has been one of the most interesting hematology-history interface conditions out there,” describes Christine Cserti-Gazdewich, MD FRCPC, transfusion medicine specialist at Toronto’s University Health Network, “tracing back to the royal family to this population [of hemophilia survivors] being hit most by the tainted global blood tragedy.”

Thankfully, tremendous strides in research and drug discovery have enabled people with hemophilia to live long, healthy and productive lives. In “Portraits of Progress,” Rankin’s photographs enable visitors to witness the advancements in hemophilia treatment – from the discovery of the hemorrhagic disease in 1803 to the first human gene therapy clinical trials in 1998 to ongoing gene therapy trials today. The multimedia exhibit is nothing short of poignant and inspirational.

The fragility of life, particularly in the setting of a historic global infectious disease outbreak, was not lost on the acclaimed photographer who has shot covers for Elle, GQ and Rolling Stone. “Life is so sacred,” Rankin reflected. “We take medicines for granted. Many of these people I photographed wouldn’t be alive without innovations in science and medicine. Photographs capture a moment in time.”

Clinical hematologists like Dr. Cserti-Gazdewich recognize that none of these treatment breakthroughs would be possible without people with hemophilia “pushing the improvements in our blood system,” leading to careful screening of donated blood across the U.S. today, as well as the discovery of “recombinant blood products replacing plasma derived factors (i.e. scaled-up biotech).”

Practicing medicine brings me intellectual fulfillment, but art fills me with visceral joy. I’ve been playing piano and drawing since I was seven years old. Playing a Chopin Nocturne at 10:00pm is as therapeutic for me as I imagine photography is for Rankin. He is a healer, and like me, he knows his subjects (patients, in my case) are his best teachers: “It’s a privilege to capture a moment in time. It’s a collaboration. A statement of history.” I am grateful to creative minds like Rankin who merge art with medicine. You can learn more about hemophilia on my YouTube show about Blood Disorders.

If you weren’t able to catch “Portraits of Progress” in New York City, the exhibition will be touring the U.S. and Europe later in the year. This was Rankin’s first live exhibit in the U.S. in three years. It’s your chance to “meet” heroes like Wayne who remind us that “hemophilia is no longer a death sentence. We have a ways to go but the future is very bright.” And don’t we all want to see a brighter future?