Hannibal Clinic center that treats rare pulmonary disease earns excellence desgination

Posted: Aug. 16, 2013 9:53 pm Updated: Sep. 6, 2013 11:15 pm

Herald-Whig Staff Writer

HANNIBAL, Mo. -- Susan Owens had never had a cigarette, but had the lungs of a smoker.

A CT-scan revealed chronic obstructive pulmonary disease at the bottom of her lungs. Her family had a history of pulmonary disease -- her father had died at 77, her grandfather at 55 and her great-grandfather at 35.

At the age of 60, Owens wasn't ready to join them. So she took her symptoms to pulmonary specialist Humam Farah with Hannibal Clinic, and he tested her for Alpha-1 Antitrypsin Deficiency, which is a common but infrequently diagnosed genetic disease.

"We all decline, but if you have Alpha-1 we expect that your lung function will decline faster," Farah said. "It's been called one of the most lethal genetic diseases in the white population."

The Alpha-1 Foundation estimates that 100,000 people in the United States have the disorder. This inherited condition may cause serious lung disease in adults or liver disease at any age.

Hannibal Clinic has the only Adult Lung Alpha-1 Clinical Resource Center in Missouri. The center received a designation of excellence from the Alpha-1 Foundation July.

Farah has treated 18 patients on site, but also has served patients all over the country through telemedicine. Farah said most of his patients travel from within a 90-mile radius for treatment.

Owens, a member of the communications faculty at Illinois State University, travels more than three hours from her home in Pontiac to receive treatment. Since her diagnosis, she has received inhalers for her symptoms and augmentation therapy through an IV once a week.

There's no cure for Alpha-1, but the therapy reduces the progression of her lung disease.

"I'm still teaching," Owens said. "I'm still doing everything, but I really believe if I wasn't on my medication, I wouldn't be."

Common symptoms include wheezing, chronic bronchitis, reoccurring chest colds and year-round allergies. In Owens' case, she struggled with shortness of breath and coughing. These symptoms can indicate any number of conditions.

"The difficulty with Alpha-1 is that the symptoms are nonspecific," Farah said. "There's nothing that can pinpoint it … The diagnosis is often delayed and it (can) take up to six doctors to get it right."

Farah said often times Alpha-1 patients aren't identified until lung function has decreased to the point of needing a transplant. He encourages any nonsmoker with a pulmonary condition to seek a blood test to identify Alpha-1. These tests may be provided free and confidentially through the Alpha-1 Foundation.

"I think there's a lot more alpha patients out there that just don't get tested," Owens said.

With an early diagnosis, a patient can make lifestyle changes that prevent a dramatic decrease in lung function. Farah said wearing masks in toxic environments, quitting smoking and exercising more may all benefit someone with the condition.

"There's no reason for people to be out there without treatment," Owens said. "We have treatment available and COPD is no fun to live with by a long shot."