Alpha-1 Antitrypsin Deficiency (Alpha-1)
What is Alpha-1?
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition that is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. There are several abnormal alpha-1 antitrypsin genes, and your risk of lung or liver disease depends upon the type of genes you inherited.
You can read more about Alpha-1 at the Alpha-1 Foundation Website.
What should you do if you have Alpha-1?
Not everyone who has Alpha-1 needs treatment. But there are treatments available if indicated. Because Alpha-1 is a rare disease, we recommend being seen at an Alpha-1 Clinical Resource Center (CRCs). The CRCs specialize in patient care, education and research for those with Alpha-1 Antitrypsin Deficiency (Alpha-1). Some centers treat lung disease and others liver disease. Many have other resources for Alphas, such as support groups, pulmonary rehabilitation and organ transplant programs. There are CRCs in most states but not all.
A list of CRCs is available here.
The University of North Carolina at Chapel Hill is an Alpha-1 Clinical Resource Center. The Center is led by Dr. Brad Drummond and also includes specialists in liver disease. The UNC CRC is able to perform breathing tests, CAT scans and liver screening. We can work closely with your referring doctor.
The UNC Alpha-1 Clinical Resource Center is here to help.
For clinic appointments, call 984-974-5703.
Our clinical nurse coordinator is Nancy Boughey, RN (919-445-0368).
Alpha-1 Clinical Research Studies at UNC
Researchers at UNC are often conducting studies for patients with Alpha-1. For Alpha-1 research-related inquires, contact our research office at 984-974-2963.