An Alpha-1 COPD Love Story

Sally Everett recounts struggle with Alpha-1 COPD in new book

Published: Wednesday, January 25, 2012, 6:07 AM

 By Christine White 

Photo by Cory WhiteSally Everett at her home in Longmeadow. Everett has written a book about her battle with chronic, genetic lung disease.

LONGMEADOW - In 1993, Sally Everett was 50, a single mother, living in Nyack, N.Y., and working as regional director of the Medicaid fraud unit in the attorney general’s office, when a bout of pneumonia led to a devastating diagnosis. 

Doctors told her she had Alpha-1 COPD, a genetic pulmonary disease. They gave her 10 years, at best, to live. 

Nineteen years later, and now living at Glenmeadow with her husband, Dr. Gordon L. Snider, Everett has written a memoir - “An Alpha-1 COPD Love Story,” published by Small Batch Books. It is about her journey from health to illness, the love she encountered along the way, and her fight to raise money and awareness to battle this deadly disease. 

“COPD (Chronic obstructive pulmonary disease) is the third greatest cause of death in the U.S., after heart disease and cancer,” Everett said recently, “and yet the Centers for Disease Control doesn’t have a budget for it. Every four minutes someone dies of COPD.” 

Everett is working to change that, but she didn’t start out embracing her illness or championing its cause. 

“After my diagnosis, I gave myself one week to feel sorry for myself, and then I just got on with life,” she said - with one exception. “I threw caution to the wind. I gave myself permission to be extravagant for one whole year.” 

But when the year ended, it was time to confront her condition. She joined a church and its support group for those with challenging illnesses. 

“It enabled me to open up,” she said. 

She was also ready to meet and embrace others with Alpha-1 COPD and in 1994 joined their association. 

“I found strong people there, with a good attitude,” she explained. “Many of them are still good friends.” 

Then in the late 1990s, she was elected to the board of the Alpha-1 Foundation. Unlike the Alpha-1 Association, which serves as a support group and information distributor, the foundation is designed to raise money for research. 

Also elected to the board that year, as science adviser, was Dr. Snider, a renowned pulmonologist. They became good friends. Everett didn’t realize how good. 

In 2001, he called her from his home in Boston and told her that he loved her and wanted to start a relationship. 

“You could have picked me up off the floor,” Everett said. The only response she could think to give him was, ‘Can I get back to you in a couple of weeks?’” 

A year later, she moved to Boston to be with him and in 2006, they married. That same year, they moved to Longmeadow. Oddly enough, their roles have in some ways reversed. She was the one with a critical diagnosis when they met. Since then, Snider has suffered a stroke and has battled lymphoma. But they have a philosophy they live by: “Life’s still worth living if it beats the alternative.” 

Alpha-1 is a deficiency in a protein, manufactured primarily in the liver, that protects the lungs. It can affect both the liver and lungs, leading to COPD in adults and liver disease in newborns, children and adults. 

COPD is often called “Smokers Disease,” but new research points to a genetic predisposition in those diagnosed with it. That’s why only about 20 percent of smokers get it. According to Everett, awareness of this condition needs to be raised, since even many primary care physicians are unfamiliar with its genetic aspect. 

“Both liver doctors and pulmonologists know about Alpha-1 and know to test right away for the genetic component when they encounter liver disease or COPD, but among family doctors and internists, it’s not so well known.” she said. 

Clinical trials are now under way in New York to test all newborns for the genetic disorder. While there’s nothing that can be done to cure the problem, short of a transplant, anyone with a predisposition would be warned to protect themselves from risk factors such as smoking, and environmental and industrial pollutants. 

It took Everett 2 1/2 years to write and publish the book. 

“I started out writing the book for my grandchildren,” she said. “I wanted them to know they always have choices. It may not be the choices you wish you had, but you always have choices. Then I realized that I could help others, as well. Stuff happens in life that we can’t predict. It’s what we do when it does that defines us.” 

The book is available at www.amazon.com or www.barnesandnoble.com. Half the profits from the sale of the book will support research into Alpha-1 and COPD. 

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