After talking with friends and family about alpha-1 antitrypsin deficiency (AATD), I was a little shocked to realize I haven’t done very well at explaining it.
My sister told me, after all these years, that she still didn’t really know what it was, and I learned several of my closest friends were also in the dark about AATD. So, I have learned a little bit from attempting to right that wrong that I would like to share with you.
I think sometimes when I have explained it in basic terms, it probably discouraged any questions. A friend told me once that she wouldn’t want to pry with more questions if a person gave them a simplified answer to a question about a disease. And that’s when I would assume that the person wasn’t really interested at the time and I would stop trying to overexplain.
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I really don’t think there is such a thing as overexplaining in the world of AATD. Even though there is much left to be understood, we can still make sense of the processes that lead to COPD. However, one must also explain what COPD is because most people who don’t have it are unfamiliar with it.
Read more about how AATD is diagnosed
I realized I hadn’t explained it in depth to people because I thought people’s attention span wouldn’t be long enough for me to explain. And I didn’t want to burden anyone with my troubles if I didn’t have to. But I found that explaining it in depth tended to help people, rather than confuse or bore them.
Here is how I would explain AATD to someone who did not know about it. I would first say that it is basically a genetic protein deficiency that can cause a form of COPD. COPD is an umbrella term for obstructive lung disease. I would explain that is can also cause emphysema, which develops when the air sacs of the lung break down from inflammation or lung damage or both, and this process causes stress and further scarring, making it harder to breathe.
Patients with AATD can develop other issues like asthma, chronic bronchitis, and other inflammatory problems. People who smoke are likely to develop these things between 50 and 60 years old. But, patients with AATD who get COPD typically develop it in their 30s, many of them without having ever smoked.
I tell people that the infusions I get replace the protein that would normally be circulating in a healthy person’s veins. It’s typically given to COPD patients with AATD. Emphysema is progressive, but infusions can stop the progression or slow it down by calming down the inflammation.
It’s a very serious disease, but that is why getting treatment is so important to me. It’s not a death sentence, but it is important to care for myself. And that’s what we need from others.
Read more about AATD etiology
This is what our friends and loved ones want to do. They want to care for us, and they can’t do that if they don’t understand our condition beyond a superficial level. A majority of the people I hear from are family members of someone who has AATD and they really, really care about that person.
Sometimes, after you’ve really learned a lot about something, you can forget how to explain it or you can lack the patience it takes to start from point A. But I find people really appreciate a thorough explanation, although they may need a refresher on it sometimes. Knowing that people actually understand is a relief and an encouragement.
It’s just finding a way to explain the processes and medical terminology that can seem hard, but because our doctors and fellow patients are often the ones with the most knowledge, it is our job to educate others. It may feel like people aren’t asking questions, but perhaps we need to ask ourselves, what have we explained when we got the first questions?
And how often do we offer to explain it, rather than assume the other person has done their own research on a condition they don’t know how to pronounce, much less spell? It really does call for some extra time and patience, but it is rewarding to sense we are not as alone as we thought we were—it really is worth it.
