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Metamorphosis of an Alpha-1 Patient

Metamorphosis of an Alpha-1 Patient
Friday, March 16, 2012
Reflecting on my confirmed diagnosis of having inherited Alpha-1 Antitrypsin Deficiency ZZ and thinking about where I am today closely parallel the metamorphosis of a butterfly. Encouraged by my younger brother and his wife, a nurse I reluctantly ordered a test kit. My precious brother had been misdiagnosed for ten years. When a new pulmonologist finally diagnosed Bruce, he was a ZZ with a...
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Walking sticks are “functional art” — and a contribution to research

Friday, March 16, 2012
Marvin Sineath and Dick Chappell have never met, or even spoken on the phone, but they’re teaming up to raise money for Alpha-1 research, and they’re doing it from two different states. Chappell started making walking sticks for fishing in fast-moving streams. The combination of slick rock and rubber waders often made the footing treacherous. Chappell had a tendency to get...
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One Transplant, Two Cures

One Transplant, Two Cures
Friday, March 16, 2012
Michael Locke could easily run up the steps of his summer cottage in the popular Canadian vacation area of Muskoka, Ontario. Why not? He was a lean, healthy man in his 50s, never smoked, and he’d run up those steps for years without a problem. He never gave it a thought. Just one year later, he had something to think about. He couldn’t run up the steps; he could barely walk up....
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The Fire Inside

The Fire Inside
Friday, March 16, 2012
When Alpha and former firefighter Ed Brailey calls himself a “steak-and-eggs guy,” he’s not just talking about breakfast. He means that he still likes hanging out at the firehouse every now and then, sharing some eats, and shooting the breeze—even though his health forced him to leave the fire company long ago. For a steak-and-eggs guy, however, Brailey can really...
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A Family Affair

A Family Affair
Friday, March 16, 2012
The Eymer family boys formed a bicycle motocross (BMX) racing team a few years ago in Wadsworth, Ill – now, to spread the word about Alpha-1, they’re letting their wheels do the talking. Jayson Eymer is a teenager in love. Although love strikes many teens as a painful experience, for Jayson it’s more painful than for most. He fell head over heels—quite...
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Gary and his EFFORTS

Gary and his EFFORTS
Friday, March 16, 2012
When Gary Bain was first diagnosed with emphysema in 1986, his doctor told him he had about six years to live. Bain couldn’t believe his ears. “Why does a doctor first tell you how long you have to live? I didn’t like that idea.” Bain does not have Alpha-1, but that story will sound familiar to many lung-affected Alphas who have been given the same kind of shocking...
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In memory of Gavin

In memory of Gavin
Friday, March 16, 2012
Alpha-1 liver disease cost Gavin his life, and now, his mother is doing whatever it takes to raise awareness so that she may one day save another child's life. In just 11 months of life, Gavin was hospitalized seven times. He went through three surgeries and had five different scars on his small body. He went on the transplant list for a new liver, and faced complications that prevented him...
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A Golf Ball in the Woods

A Golf Ball in the Woods
Friday, March 16, 2012
Gordon Cadwgan as diagnosed in 1992, when the first national meeting of the new Alpha-1 Association took place - he and his wife, Ruth, traveled from their home in Wilmington, Delaware, to the conference in Minnesota. Gordon had been running short of breath since the late ’80s, but hadn’t given it much thought. Then one day while snorkeling with Ruth, he got so breathless he...
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