By Idelle Davidson
It wasn’t until she read her husband’s autopsy report that Kathy Brewer learned his diagnosis — a disease so rare that not one doctor had figured it out. His illness began in 1998, the year Kathy, then 38, and, Gary Brewer, then 58, got married. But Gary was busy with his job as a school superintendent in DeRidder, La., and paid little attention to his backaches and knee pain, chalking them up to overexercising. Eventually, though, those first symptoms led to constant fatigue and nausea, facial numbness, congestive heart disease and kidney failure. Three years after receiving a kidney transplant, Gary couldn’t walk or swallow. Several of his organs shut down, and he died in 2007.
The cause was Erdheim-Chester disease (ECD), one of 7,000 diseases tracked by the nonprofit National Organization for Rare Disorders. The National Institutes of Health and the Food and Drug Administration call such ailments “orphan” diseases because they each affect fewer than 200,000 people in the United States.