There was something special about the meeting of scientists Drs. Peter Sims and Therese Wiedmer and Oklahomans Greg Watkins and Sandy Roark at the Oklahoma Medical Research Foundation on Thursday.
It wasn’t the broad smiles, the handshakes or the conversation – it’s that the meeting almost never happened.
Greg Watkins and Sandy Roark have the rare blood disease PNH (paroxysmal nocturnal hemoglobinuria) which carries with it a life expectancy of about 8 years after diagnosis. As scientists at OMRF, Sims and Wiedmer made the discovery that led to the creation of Soliris, which fights the symptoms of PNH and extends the lives of those with the disease.
“I just couldn’t wait to meet them,” Roark said. “Soliris didn’t just save my life—it gave me back the energy to live it.”
Approved by the FDA in 2007, Soliris interrupts a part of the immune system response which causes PNH symptoms to appear.
“Meeting Greg and Sandy was very special,” said Sims. “To know our work has helped great people like this, it’s very humbling.”
Roark, who lives in Shawnee, gasped when Sims and Wiedmer first came in the room and moved to shake both their hands.
“I bring a message from all PNH patients—thank you, thank you, thank you!” she said.
The disease, which strikes about one or two in a million, causes flu-like symptoms and fatigue. People with PNH live in fear of death from blood clots or hemorrhaging.
Watkins, a dentist in McAlester, said he’d waited a long time to get to shake hands with the people who saved his life.
“I just cannot thank them enough for what they’ve done,” he said. “Soliris gave me my life back, and that discovery would not have been possible without Dr. Sims and Dr. Wiedmer and OMRF.”
Paroxysmal Nocturnal Hemoglobinuria is a rare blood disease in which abnormal bone marrow creates red blood cells that are susceptible to harm from the complement system – the first wave of the immune system. The destruction of the red blood cells leads to fatigue and flu-like symptoms, but also increases the chance of death from blood clots or hemorrhaging. The disease affects about one or two people in million.
OMRF (omrf.org) is an independent, nonprofit biomedical research institute dedicated to understanding and developing more effective treatments for human disease. Chartered in 1946, its scientists focus on such critical research areas as Alzheimer’s disease, cancer, lupus and cardiovascular disease.