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When I first read the article called “Does AATD Cause Lung Cancer Among Never-smokers?” I had an immediate guess on that answer. I have alpha-1 antitrypsin deficiency (AATD) myself and I know a lot of other people who do, and my answer is “no.”

I say that for several reasons. First, my Facebook support group includes over 6000 members. That includes people with an AATD diagnosis, carriers, and those caring for them, and I haven’t heard from more than a handful of patients about a current lung cancer diagnosis.

I am sure that this is not far from the minds of many of us because this condition affects us in many ways. Cancer might be a concern. But normally, it is COPD, asthma, and respiratory issues that we deal with regularly.

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I don’t think our doctors ever use the term in our appointments, so most of us have no reason to wonder about it. It seems like it is pretty specific in the way it presents itself. For those of us who are lung-affected, we are likely to have asthma, emphysema, and a few other issues.

Read more about how AATD is diagnosed

AATD is caused by a deficiency in alpha-1 antitrypsin, which is a protein that keeps inflammation under control in the lungs. It is normally most helpful after a respiratory disease is gone when neutrophil elastases do their worst work. We need elastin to stay elastic, so to speak, and let our small airways have proper airflow, preventing emphysema.

I continued to read the article because I wanted to learn more. In it, Rare Disease Advisor writer Ryner Lai discusses a study conducted on hundreds of patients with cancer and hundreds more with other lung issues. When they broke down the numbers, lung cancer wasn’t common among the patients.

He also discusses another study that had the same results with an even greater number of patients. He is making the point that cancer is not nearly as genetic as AATD is. Cancer and AATD just don’t seem as related as one might think.

This kind of cancer is something directly related to smoking or a great number of other things. It is a relief to hear that I am not predisposed to such things when my lungs are compromised. Of course, I’m not going to pick up a cigarette and start smoking it, but a lot of people with AATD struggle with questions like this. People don’t know what to believe until they hear it from the right person.

In my interactions with AATD patients, I have the ability to be a bit of a thermostat in the group “room,” if that makes sense. I can help someone calm down, or I can scare them more with what I say. Additionally, I can speak the truth and respond to people better because of articles like these.

The article was well-documented by reputable sources. To me, that’s enough to draw my own conclusion. And it would be to most people, but not everyone knows where to look for good information and medical advice. There seems like there is a lot of pressure on nurses and doctors and healthcare teams these days to get things right. We can forget, they are human, too. We all could use a healthy dose of patience, for others and from others.

The author says Malaysia has a government that has proposed smoking be banned. He supports it, citing the support of the medical community for the bill and the well-informed, good intentions of the government in this matter. Smoking is very destructive for patients with AATD. The diagnosis is a major reason for quitting. The thought of spending your last days “coughing up a lung” as a coworker with COPD used to say does not appeal to anyone.

Yet, of all the grim endings a nonsmoker might have with AATD, Lai says, it probably won’t be the faster death from cancer. The prognosis of that would be much worse, “with around one-fifth of patients dying within five years of receiving a diagnosis” he states.

Surely, there are many things I hate about having this condition. But it doesn’t control every aspect of my life. As we “alphas” like to tell each other, “Remember… this isn’t a death sentence.” What we have does not define us. Life is more than the accumulation of wealth or how many people one can please. It is a blessing and a tool to appreciate while we have it.