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When my doctor said, “The best thing for you is fresh air,” my first thought was: “Oh, really, that sucks for me.” I thought that because seasonal allergies are something I deal with on a year-round basis as a person with alpha-1 antitrypsin deficiency (AATD).

That day, we had just done another pulmonary function test (PFT) that showed even further decline, even though I didn’t smoke and didn’t (to my knowledge) have COVID-19. I remember the conversation because the appointment was rather long. We were discussing treatment for my lungs.

When I moved to the area I live in now, I developed allergies for the first time in my life (before my lung function declined). I finally figured out after moving to and from different apartments that it was something in the air, not the place I lived in, that necessitated I buy expensive allergy medicine weekly to keep from having debilitating, excruciating sinus headaches.

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Over the years, I gradually had less and less of a reaction to allergens, but I still always feel more ill as spring approaches. I sometimes wonder if my lung function would be better if I didn’t live in the area I do? I searched online for clinical trials to address this question but I found nothing to turn my guess into something that could be validated.

It seems like it would be helpful if more studies and research trials on the effects of seasonal allergies on people with AATD were undertaken. It’s a rather known fact that those with asthma tend to have more problems than those who don’t. But what kind of burden do allergies have on the AATD patient’s lungs? 

Read more about the diagnosis of AATD

Do allergy symptoms not come from inflammation in the airways and does not AATD tend to worsen inflammation in the airways? Those combined factors would imply the person has numerous symptoms suggesting larger risk factors for AATD patients. Yet, can a doctor honestly state this to a patient who is consequently contemplating moving to a different state for these reasons?

It becomes even more complicated when dealing with anyone other than a PiZZ genotype. I am a PiSZ and on the border of the “protective threshold” that allows for an unknown amount of protection. So my symptoms are quite a bit harder to predict, as is the case in many other patients.

There are definitely some allergy medications that have helped. And the ones that did I know I am not supposed to take long term, which is what I need. The others either didn’t make a difference or created hearing loss in my ears during working hours, which meant I need to quit working altogether or struggle with my condition to the bitter end. 

I like working. I went to a college that taught me the benefits of working hard and I have come to actually enjoy it and the ability to keep myself financially free. I realize that financial help is something many people do actually need, and until I know for sure I am there, I am going to work as much as I can.

I have watched others live on disability and I respect them, but I also realize there are limitations financially there that I wouldn’t have if I had a stay-at-home job or something else that paid the bills. So, I could sit back and watch my body’s function decline. Or I could try to make a difference.

That’s what I’m doing now, and yes, I am definitely enjoying working as a writer for Rare Disease Advisor, I also want to advocate for the voices of thousands of other AATD sufferers when I say that seasonal allergies seem to be hurting us. I say this because I don’t want to find out after 30 years that I have wasted my voice by being quiet about what’s wrong.

Living in the Ozarks has taught me to have good relationships with others, and to value those relationships as well as my life enough to keep taking good care of myself in the midst of turmoil. It’s a lot of pressure. But I have support that helps me make a difference in preserving the sweet years ahead.