All One Blood

January 19, 2018
PHOTOGRAPHY BY UI HEALTH—HOSS FATEMI AND JOHN FRANCIS

Nana Kwabena was in and out of the hospital as a kid. He was born with sickle cell disease. It is a blood disorder that can be passed from parents to their children.

Kwabena’s brother, Kwame Baffoe-Bonnie, died of the disease in 2011. A year later, Kwabena, now a Grammy Award–nominated music producer, started AllOneBlood. The organization works to raise awareness of sickle cell disease and help young people who have it.

Singer John Legend visits sickle cell disease patients at the Children’s Hospital of Los Angeles in 2013.

ALL ONE BLOOD

AllOneBlood also aims to bring cheer to kids in hospitals. When Kwabena was undergoing treatment as a kid, the hospital would sometimes bring in a special guest. Whether it was a professional athlete or other celebrity, Kwabena told TFK, “they never stopped to visit the hematology clinic.” (Hematology is a branch of medicine that involves the study of blood.) “I remember the feeling of that,” he says. That’s why he brings VIPs to visit children hospitalized with sickle cell disease. One famous face? The singer John Legend.

A Forgotten Disease

Worldwide, about 25 million people have sickle cell disease. In the United States, it affects approximately 100,000 people, according to the Centers for Disease Control and Prevention.

People with the disease have hard red blood cells shaped like a sickle. (A sickle is a farm tool with a blade shaped like a C.) Red blood cells are normally soft and round. They carry oxygen through the body. But sickle-shaped cells can clog blood vessels. This makes it hard for the body to get oxygen. It can cause pain.

A sickle cell is shaped like a crescent, unlike a normal red blood cell, which is round.

DR. STANLEY FLEGLER—VISUALS UNLIMITED/GETTY IMAGES

Studies show that one out of every 365 African-American children is born with the disease. So is one out of every 16,300 Hispanic American children. Many people wrongly believe that the disease affects only minorities. Because many people know little about it, some call sickle cell the forgotten disease.

The Road Ahead

AllOneBlood supports efforts to find a cure for sickle cell disease. The organization hosts fundraising events to raise money for research. There are signs of hope. In 2015, the University of Illinois Hospital, in Chicago, announced that it had cured the disease in 12 adults.

Kwabena hopes to push sickle cell to the forefront of conversations about diseases affecting large numbers of people, especially children.

“I encourage kids to know that if you have sickle cell disease—or anything—that makes you who you are,” he says. “[It] can become a superpower for you to navigate the world with.”