Syl’s Story

Alpha-1 is a family affair. Syl illustrates that there is never just one Alpha in a family. Having this rare disease does not define Syl. He is an inspiring patriarch and an active Alpha!

“I thought I was healthy and fit. So did my doctor. I only saw him every few years for a physical. However, over the course of thirteen years I kept mentioning to him repeatedly that I was not able to keep up with my running partners, despite hard training. And it was getting worse. He assured me that it was just a matter of aging; I should not worry because I could still outrun 95% of people my age. So I trained harder, but still got slower. Finally, a perceptive chiropractor advised that I should insist on a referral to a pulmonologist. The diagnosis of Alpha-1 was almost immediate. That happened around 2005.

That experience illustrated what I later found out about Alpha-1 diagnoses: By some estimates, as many as 90% of Alphas were undiagnosed or misdiagnosed. Did this happen because I (and so many others) just had a bad doctor? Not at all. He is widely recognized as an excellent doctor. But when he went to medical school, Alpha-1had only recently been identified. And when I was diagnosed, quite a few family practitioners had seldom, if ever, seen a diagnosed Alpha. So, it’s not surprising that he would not quickly conclude that a rather high-performing distance runner should be checked for Alpha-1, or any kind of COPD for that matter.

But Alpha-1 is not just about me. Soon after I found out that the symptoms of Alpha-1 have a genetic component, as well as the factor of exposure to lung pollutants. I had been exposed to Agent Orange in Vietnam, so that helped explain my symptoms. But what about related loved ones? Should they be tested? As it turned out, two of my siblings have it, though without symptoms. My wife is a carrier, so, unsurprisingly, two of my four children have it. Two are carriers, neither with symptoms. I am thankful that none of my siblings, children, or I, have ever smoked. Knowing the risks now enables all of us to be more careful about minimizing exposure to pollutants.

So, how devastating does an Alpha-1 diagnosis have to be? Given the amount of lung function loss I had, it was obvious I would never again be a competitive distance runner. That was emotionally hard to accept, but it was also a relief. No longer did I have to beat myself up by trying to train harder to keep up with my peers. Expert advice said I did not have to abandon physical activity and fitness and descend into a defeated sedentary life. So, I tried short distance sprinting, even though I had always thought of myself as a good distance runner, and a bad sprinter. It was hard, but by the time I was out of oxygen the race was finished! In my early sixties I won a bronze and silver medals in my age group at the Ontario masters championships, and, for a short time was ranked 12th in Canada in the 100 meters in my age group, competing against able-bodied competitors. Other health concerns prevent me from running now, but it was very satisfying while it lasted. And now, at age 71, I still try to maintain a high level of fitness within the limitations I have.”