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Recently, I read an article written by Ryner Lai, MBBS, one of our medical writers at Rare Disease Advisor. He reported that inflammation occurs in the lungs before chronic obstructive pulmonary disease (COPD) shows up in alpha-1 antitrypsin deficiency (AATD). I am no medical student, but what he reported makes a lot of sense to me, an AATD patient.

I really appreciated this article, because it shows something more is going on below the surface in AATD patients. I had a lot of good pulmonary function test (PFT) results even while I wasn’t managing my symptoms well. The article indicates reducing inflammation before a COPD diagnosis might help us patients.

Bronchodilators are good, but not having a reason to use them is even better. As far as corticosteroids go, I don’t mind the daily preventative inhalers I take, as they help prevent attacks. I really do believe they should be used before emphysema is diagnosed in AATD patients.

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I know how I feel better than anyone else does, and I know my physical boundaries. Sure, there could be all kinds of other reasons for this. But these findings from the “lung fluids” (as I call them) of asymptomatic AATD patients are talking.

Read about experimental therapies for AATD

I believe we need to listen. The rest of the article goes on to say that “normal environmental exposures” can induce inflammation, creating chronic lung disease. I put an emphasis on the word “normal” because we are talking about life that most people live. If I am exposed to the same irritants you are, then I am in trouble. Normal life could literally make me sick.

Not that I wasn’t aware of that, but a lot of the world doesn’t know it. My PFT test results show early signs of emphysema even though I don’t smoke or expose myself to it. I don’t know about you, but I am not OK with that. I want the world to know that AATD is dangerous to have even if the patient is not smoking. Because of what I have gone through, I believe emphysema is probably more common that any of us know.

I have read so many studies showing that AATD inhibits the body’s ability to fight inflammation in the lungs. The human body can torment itself in the right situation. And though I might look healthy, I don’t feel like it. Emphysema is such a sad disease. It’s like a part of a vital organ is dying almost. It isn’t known to get better, and it doesn’t go away with antibiotics.

I have had symptoms of asthma since I was young. It got progressively worse as time went on. Was I around smoke a lot? Did I have pollution exposure? My answer is: I was not exposed to this any more than the normal kid. I enjoyed the outdoors and I was outside as much as possible. I enjoyed fresh air, blissfully unaware of my condition.

What we know now is that AATD does affect people much more than we thought. And it affects more people than we thought, too. So this is evidence that we can use to start therapy on people who don’t know what might be awaiting them at 35 years old, or 32, or even 45. All I can tell you is that it’s not fun. I hate having to say no to hikes and campfires. I hate that I can’t do more than 15 minutes of intense exercise at a time.

But we have learned a lot from science about this. I am thankful for the fact that I have a name for this disease. I am thankful for the treatment I have received thus far because it has helped me. We know what it is and we are even using that knowledge to look into new treatments. One day, we may not even need augmentation therapy. I know there are a lot of us who would like that.

It’s great that I can look forward to the future, knowing I have a good team of doctors and people around me. I can be independent right now, because I also know it’s not all in my head. I’m looking forward to where this takes us if we keep all this learning up. I think I speak for the rest of the AATD community when I say we want to know what to expect from this condition. We want to love our families and friends well.

We want to continue to live good, quality, energetic lives as long as we can. And we want that for generations to come. I’m pretty sure we are on our way to a lot of good things.