News Headlines Article

Baby Boomers With Hemophilia Didn’t Expect To Grow Old
National Public Radio

Randy Curtis was in second grade when he and his parents got devastating news from a specialist in blood disorders. Curtis had merely fallen and bumped his knee, but he remembers the doctor’s words: ” ‘You know, these kids don’t really live past 13.’ “

“So, I went back to school the next day,” Curtis remembers, “and told my math teacher, ‘I don’t have to learn this stuff. I’m going to be dead!’ “

But, he was wrong. Curtis, now 61 years old, has hemophilia, a rare genetic disorder that makes his liver unable to produce a protein that helps blood clot.  Only about one in 5,000 boys in the U.S., and significantly fewer girls, are born with the blood disorder. Today, Curtis is part of a cadre of men and women who faced and escaped death more than once because of twists and turns in the treatment of hemophilia — men and women now looking toward a retirement they never expected to see.