Research into my rare disorder, Friedreich’s ataxia (FA), seems to me to be on the rise. Though no specific treatments for FA exist, a wide range of ongoing studies is exploring different ways of treating this debilitating disease. It seems that scientists increasingly are taking an interest in FA.
Before I become too optimistic, though, I remind myself that I’ve been to this rodeo before. When the defective gene that causes FA was discovered, members of the FA community suspected that a treatment or cure could be coming. However, decades later, no treatment or cure exists. And FA, the grim locomotive, barrels forward, causing nonstop physical progression and far too many deaths.
Sometimes it’s hard to be hopeful while living with FA. Like a drowning man desperate for air, sometimes I seek reassurance that scientific advances toward a treatment are indeed real.