After more than four decades on the football field with some of the nation's biggest and toughest men, former NFL player and coach Monte Clark was nearly sidelined by a little-known medical condition.
Clark, age 69, was diagnosed five years ago with Alpha1-Anti-trypsin (AAT) deficiency, a genetically linked disorder also known as Alpha-1 or hereditary emphysema. An estimated 100,000 people in the U.S. have Alpha-1 and up to 95 percent are undiagnosed.1 The condition is caused by a reduction or lack of the blood protein AAT in the lungs.
When a simple, inexpensive blood test revealed that Clark had Alpha-1, he had only recently completed chemotherapy to combat Waldenstrom's disease, a cancer of the immune system. He wasn't ready for more bad news about his health.
"I didn't want to hear it," Clark said. "I avoided my doctor's treatment recommendation and figured the diagnosis was something I could deal with down the line, if I had to."
In his NFL career, Clark had played through injuries and earned a tough reputation, as well as three Super Bowl rings and a record for the winningest season in NFL history working with former Miami Dolphins head coach Don Shula. He was used to physical adversity.
"When I continued to have trouble with chronic shortness of breath, I thought I could handle it," said Clark. "But Alpha-1 was making this old footballer winded just walking up the stairs."
It took an innocent comment made by his granddaughter during an outing at his Michigan lakefront home to convince Clark that his increasingly labored breathing was serious enough that he needed medical help.
"I was reaching down to untie a rope from our boat and she said, 'Grandpa, what are you blowing on?' I wasn't blowing; I was gasping. I could hardly breathe. That's when I knew it was time to take action," Clark said.
Soon after, Clark attended an Alpha-1 Foundation seminar on AAT deficiency and learned more about the disease and its symptoms by meeting doctors and other health care professionals and people who have the condition. He learned that the shortness of breath and wheezing he had experienced were just two of the symptoms that can indicate Alpha-1. According to the American Thoracic Society and the European Respiratory Society, other symptoms and conditions that can indicate or lead to hereditary emphysema include chronic obstructive pulmonary disease (COPD), family history of emphysema/COPD, liver disease or panniculitis, asthma that doesn't respond well to medication and liver disease with an unknown cause.
"For anyone with this diagnosis, I recommend talking with an expert and fellow Alphas," Clark said. "By opening myself up to others, I found the optimism I'd always had on the football field. I was finally able to do something about my condition."
"Early detection is important," said Clark's pulmonologist, Steven Gay, M.D., of the University of Michigan Medical Center. "Alpha-1 can be accelerated by lifestyle factors, including smoking, and cannot be reversed once it causes deterioration in the lungs. But many Alpha patients can enjoy a full and active lifestyle with proper diagnosis and treatment."
Clark attests to that fact. "I'm able to do most things and I feel good," he said. "I've realized that the best approach to any chronic disease is to face it head-on with an attitude of hope and perseverance. I have always said that adversity doesn't build character, it reveals it."
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1 American Thoracic Society/European Respiratory Society Statement: Standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. Am J Resp Crit Care Med 2003;168:818-900.
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