Why Cure COPD?

Hello.  My name is Sally Everett and I have Alpha-1 COPD.  That’s chronic obstructive pulmonary disease (COPD) caused by a genetic abnormality called Alpha-1 antitrypsin deficiency (Alpha-1).  I was diagnosed nineteen years ago.  Today I’m on oxygen 24/7.  But, as my husband would say, life’s definitely still worth living because it beats the alternative hands down.

When I was diagnosed, I was a single parent and a successful attorney.  I was also healthy, or so I thought.  I ate right, I didn’t smoke, I was almost never sick and I exercised regularly.  But a simple cold turned into pneumonia and I had to be hospitalized.  X-rays revealed previously undiagnosed COPD. A subsequent blood test confirmed the diagnosis of Alpha-1 antitrypsin deficiency. Needless to say, I was devastated.

One year later, however, I got back to the business of living. Not long thereafter, I met another Alpha (person with Alpha-1) named John Walsh. Before I knew it, he had convinced me to join the board of the Alpha-1 Foundation, one of the best decisions of my life. Not only did it shift my focus to the search for a cure for Alpha-1, but also one of my fellow board members became my current husband.

Three years ago, I decided to write a “little book” for my grandchildren. I wanted to share my story with them.  I wanted to tell them that, no matter how bad things might seem, they would always have choices. Two and a half years and two hundred pages later, my little book was actually published. I called it “An Alpha-1 COPD Love Story”, and dedicated it to my husband, Dr. Gordon l. Snider.

Along the way, I discovered that not only did I enjoy writing, but also there were some who actually thought I might have some talent. The next question was where to apply it. The answer was simple. I’d become an advocate for a cure for COPD. The next question was how. I wrote an Op-Ed piece for the New York Times. It wasn’t accepted. Then my daughter suggested a blog.

Current estimates are that there are twenty-four million of us in the United States today that have COPD. But more frightening is the estimate that twelve million of us don’t know it. Likewise, current estimates are that there at least 100,000 Alphas in the United States today and less than ten thousand of us know it. For those of you who don't know it, Alpha-1 is the principal genetic cause of COPD. 

In sum, my first ojective in creating this blog is to advocate for a cure for COPD. But both Alpha-1 and COPD are treatable, especially if diagnosed early enough. That's my second objective, to advocate for early diagnosis for both Alpha-1 and COPD. My final objective is to continue my advocacy for a cure for Alpha-1. 

Over the next day or two, I will post my unpublished Op-Ed piece. In the meantime, I’d love to hear from you. What to you think of my mission?  Will you join me?