GAINESVILLE, FL — Susan Kelbaugh was in her mid-40s when she began to experience unusual breathing problems. Unable to climb a set of stairs without gasping for breath, Kelbaugh realized the problem was more than being out of shape and middle-aged. Kelbaugh, who has never smoked in her life, soon sought a medical explanation and was told she had asthma. As the years went on, Kelbaugh kept experiencing more and more breathing problems.
Then, in 2002 at the age of 54, she volunteered for an asthma study, where after a simple spirometry test; she found out that her lung function was only forty-five percent. That led her to an appointment with a pulmonologist who quickly identified her using a simple blood test as having a type of hereditary lung disease known as Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare genetic condition that can cause life-threatening liver disease in children, and can also lead to severe liver and lung disease in adults.
According to Kelbaugh, “After being diagnosed with having Alpha-1, I was put on augmentation therapy, which are weekly IV infusions of alpha-1 antitrypsin derived from human plasma. This prevents my lung function from getting worse. Alpha-1 awareness and education is important as early diagnosis can keep complications at bay. Early diagnosis can also help one live longer with a better quality of life. For those that are newly diagnosed, you are not alone. Attending an Alpha-1 Education day is one of the best things I have ever done. The amount of information available is tremendous.”
Kelbaugh will be among more than 100 people attending an Alpha-1 Education Day at the Hilton University of Florida Conference Center located on 1714 SW 34 Street on February 2, 2013.
Attendees will hear Mark Brantly, MD, director of the Alpha-1 program at the University of Florida. He will discuss Alpha-1 lung disease and shortness of breath. Ginger Clark, MD, MS, also of theUniversity of Florida, will be speaking about Alpha-1 liver disease and recent developments. During the breaks, patients have a chance to view exhibitor’s displays and enjoy a complimentary lunch.
To make reservations for the program, contact the Alpha-1 Association, 800-521-3025 ext. 308. Reservations for a free patient dinner held on Friday, February 1st at 7:00 pm can also be made by contacting the Association. The deadline to register is Monday, January 28th.