MIAMI, June 20, 2016 /PRNewswire/ -- At 35, Mark Callahan had abnormally high liver enzymes. A church deacon who never drank or did drugs, Callahan had liver cirrhosis by the time he was 40.
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At 52, after doctors suggested his symptoms might be due to weight or diabetes, he finally learned the real reason for his progressively worsening liver disease: Alpha-1 Antitrypsin Deficiency. Five years later, unable to get a liver transplant, he died.
His daughter, Kari Taylor, a nursing student who wants to care for people with Alpha-1 when she graduates, will be among more than 600 Alpha-1 patients, family members, caregivers and supporters at the 25th Alpha-1 National Education Conference in Miami, FL, June 24-26.
Alpha-1 can lead to severe lung disease in adults and liver disease at any age. Like Callahan, most people with Alpha-1 visit multiple doctors over several years before they are correctly diagnosed. Because Alpha-1 is genetic, it often causes lung or liver disease in several members of a family.
Taylor, 41, of Tyler, Texas, wants to become a nurse practitioner to help people like her father get diagnosed and treated sooner. She also wants to raise awareness of Alpha-1, and help find a cure.
“There is hope if you catch it soon enough,” she said. “If my daddy had caught it soon enough, he might still be around.”
Participants at the National Education Conference will hear some of the world’s leading experts talk about the lung and liver diseases of Alpha-1, as well as progress in research and treatment.
The many exhibits will include information on our nationwide patient detection and family testing efforts, with a spotlight on the State of Florida Department of Health booth that highlights the state’s unique genetic testing program for Florida residents.
More than 40 AlphaNet coordinators will attend and are looking forward to meeting hundreds of the people they serve. AlphaNet coordinators now provide disease management to more than 5,000 Alphas in the U.S. and Canada.
The National Education Conference will take place at the InterContinental Miami hotel, 100 Chopin Plaza, Miami, FL.
Part of Saturday’s conference agenda will be streaming live at www.alpha1live.org. The rest of the sessions will be webcast.
View the National Education Conference agenda here.
About Alpha-1 Antitrypsin Deficiency
Alpha-1 affects at least 100,000 people in the United States, but fewer than 10 percent have been properly diagnosed, even though the condition can be detected by a simple, accurate blood test. Anyone with a family history of lung or liver disease, or diagnosed with Chronic Obstructive Pulmonary Disease (COPD) or emphysema, nonresponsive asthma, or chronic or unexplained liver disease should be tested. Alpha-1 is the most common known genetic cause of emphysema and is often called “genetic COPD.”
About the Foundation
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. The Foundation has invested nearly $60 million to support Alpha-1 Antitrypsin Deficiency research and programs at 103 institutions in North America, Europe, the Middle East, and Australia.
For more information, see www.alpha1.org.
Contact: Bob Campbell
Email
305-567-9888 ext. 230
Direct: 813-732-1354
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SOURCE Alpha-1 Foundation
