What I Mean When I Say 'I'm Purely a Lung Girl'

“Purely a lung girl”. That’s what I always tell my doctor. “Do you get migraines?” “No.” “Do you have gastrointestinal issues?” “No.” My answer is always, “I’m purely a lung girl.”

Since I was 2 years old, way too many years ago, I’ve struggled with lung issues. Asthma, asthma affected by allergies, pleurisy, bronchial infections, pneumonia, biopsies. I’ve had them all. Basically in the order presented.

I rarely get fevers, or any other “normal” illnesses, but if something can affect my lungs, it will. It took me many years (if you figure, it started at the age of 2, 51 years to be exact!) to find out that the cause of my lung issues was Alpha 1 antitrypsin deficiency. Alpha 1 is a genetic disorder, characterized by the lack of a protein in the blood that can affect either/or your liver or your lungs. I am purely a lung girl.

I was the first of my family to be diagnosed with this illness, but then pieces began to fall into place. My older brother died at the age of 49 from encapsulated strep pneumonia. Another brother has struggled with a disorder that is affiliated with Alpha 1 for the past 15 years.

Alpha 1 antitrypsin deficiency can cause a myriad of problems: liver disease, lung disease, skin disorders. It is a common genetic form of chronic obstructive pulmonary disease (COPD), particularly at a younger age. While it is often considered a rare disease, those in the know call it “rarely diagnosed,” not really rare.

It is an incurable disease. In my case, it caused irreversible severe COPD. But there is a treatment for me. I get weekly infusions of the missing protein. This helps to keep me healthier and slow the progression of the disease.

I stopped working almost a year ago. I am a special education teacher for pre-k children, and the constant contact with germs and illnesses kept me sick most of the time. Every time I got sick, I lost more lung function. Since, I’ve stopped working, I’m rarely sick! I have started pulmonary rehab and hopefully this will help build my stamina and help me regain some of my life.

Not working makes it difficult to survive financially. I lost my husband a year ago, so I’m on my own. I’m hoping to regain enough function so I can get some kind of part time work.

I’m sharing my story in the hopes that it will open someone else’s eyes, and they will get the (simple finger prick) Alpha 1 test done.

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Thinkstock photo by bubutu-

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