After 18 years of monthly blood transfusions, Elaine Sonntag-Johnson is happy to report that she doesn’t need them anymore. When she was first diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare disorder that causes the body to destroy its own blood cells, the only available treatment was transfusion of donated blood.
At the time, people diagnosed with PNH were expected to live only three to five years. With the help of hundreds of blood donors and nearly 1,000 units of blood components, Elaine beat the odds and lived long enough to benefit from a new treatment for the disorder.
“My husband always thought a treatment would be found,” says Elaine. He was right. In 2007, the FDA approved a new drug, which prevents the breakdown of red blood cells. It works so well that Elaine rarely needs blood transfusions anymore.
Now 52, Elaine works part-time as a social worker and enjoys every minute with her two kids. Doctors say she can expect to live a normal lifespan. Understandably, Elaine gets teary-eyed talking about the blood donors who helped her survive. “The gratitude can’t be expressed—they kept me alive! They are quiet heroes, helping people they don’t even know out of the goodness of their hearts. We have a blood center we can rely on every day, if people get sick or get into accidents. It’s just there.”