OMRF Stories - Fall 2008 - A New Birthday

Technically, Greg Watkins was born on August 10, 1949. But if you ask the McAlester dentist his birthday, he might give you another answer. “I tell people that April 20 is my new birthday of a new life,” he says. That’s the day in 2007 that doctors began treating his PNH with Soliris—a drug born in the labs of OMRF.

The rare blood disease first struck Watkins 12 years earlier, as he was recovering from a mild intestinal virus. One night, he woke at 3 a.m. with a driving need to use the bathroom. “I looked down and my urine was blood. It was just pure, red blood,” he says. “I was very alarmed, because I didn’t know what was going on.” Unbeknownst to Watkins, PNH had caused his body’s complement system to attack his red blood cells, spilling hemoglobin into his urine.

The next morning, as Watkins waited to see his urologist, he felt an acute squeezing pain in his chest. “At the time, I thought I might have had a small heart attack,” he says. He would later realize it was his first esophageal spasm—another symptom of PNH. The painful spasms are caused by the depletion of nitric oxide in smooth muscle and make swallowing extremely difficult.

Watkins’s symptoms would confound physicians for months before a hematologist finally diagnosed him with PNH. By this time, though, the disease had already begun to take a toll on the self-described “running addict.”

“Before PNH, I was in peak physical shape. But my doctor told me the stress and strain of running would only hurt my condition, so I had to quit,” he says. With the anabolic steroids physicians prescribed to manage Watkins’s symptoms, “I ballooned up to 250 pounds, and my blood pressure shot up, too.”

Watkins eventually began seeing Dr. Martin Brodsky, a hematologist at Johns Hopkins University who specializes in PNH. For almost a decade, Brodsky managed Watkins’s condition as best he could. Like most PNH sufferers, Watkins cycled through a variety of different drugs. Between the disease itself and the side effects of the various treatments, says Watkins, “my quality of life had deteriorated to one of worrying if today was the day I was going to have another PNH attack.”

In early 2007, Watkins traveled to Baltimore for a routine visit with Brodsky. The hematologist asked the usual questions: What attacks have you had in the last two years? How are you feeling? Has anything unusual come up? Then he delivered news that floored his patient: “We now have a cure.”

Less than a month after the Food and Drug Administration approved Soliris, Watkins got his first dose of the new drug. “In the previous 12 years, every day I’d wake up and wonder, How will I deal with the fatigue and pain of PNH? How will I make it through the day?” But with Soliris, he says, “those are no longer questions I ask myself.”

Watkins’s energy has returned and he no longer needs steroids. His blood pressure is back to normal, as is his weight. He has returned to working out regularly, and his professional life—once decimated by PNH—is back on track. In short, says Watkins, “I feel like I have a whole new life.”

Go to interactive.omrf.org to hear Greg in his own words.

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