Johns Hopkins opened its Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C) clinic in 1999.
But the clinic's story began two years earlier, when 35-year-old Carrie Campanella Becker met with cardiologist Hugh Calkins to discuss her fainting spells. She was especially worried because her father, Joe Campanella, a linebacker and later general manager for the Baltimore Colts, collapsed and died at age 36, during a handball game with Colts coach Don Shula.
Calkins diagnosed Becker with ARVD/C and urged her to get an implanted cardioverter defibrillator (ICD). She decided to wait a few months, and died one day after horseback riding.
Carrie’s brother, John, was also diagnosed with ARVD/C, and underwent surgery to obtain an ICD. He and his wife, Kathy, gave money and support to create the Johns Hopkins center. John Campanella became patient #1.
“When I was first diagnosed, very little was known,” says Campanella. “I had just turned 30, had just married. The only people I knew with the disease were my family members who had died in their 30s. I felt a big sense of urgency.”
Calkins and his colleagues gathered as much information as they could on Campanella, his family and other ARVD/C patients. The more data they collected, the more they learned about the disease.
“One of the great messages about this journey,” says Campanella, “is that patients and doctors can work together to find solutions.”