Alpha-1

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Information for Patients

Alpha-1 Week

Lung Information for Patients

What Is Alpha-1?

Alpha-1 Antitrypsin Deficiency occurs when there is a severe lack of a protein in the blood called alpha-1 antitrypsin (AAT). The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke. The low level of AAT occurs because the liver produces abnormal AAT and cannot release the AAT. This buildup of abnormal AAT in liver cells can cause liver disease.

Testing for Alpha-1

Testing for Alpha-1 is fairly simple, quick and highly accurate. It is done through a simple blood test. The test requires a physician's prescription and is usually covered by medical insurance.

Who should be tested for Alpha-1?

  • Everyone with emphysema, chronic obstructive pulmonary disease (COPD), chronic bronchitis or irreversible asthma
  • Newborns, children and adults with unexplained liver disease
  • Individuals with a family history of liver disease
  • Blood relatives of a person diagnosed with Alpha-1
  • Anyone with panniculitis, a skin disease

Living with Alpha-1

Many Alphas live a healthy and fulfilling life with proper treatment and lifestyle changes. With planning, education, support and most importantly, patience, it is possible to continue to work, travel and exercise and do the many things that you enjoy doing.

Treatment for Alpha-1

The specific therapy for the treatment of Alpha-1-related lung disease is augmentation therapy. Augmentation therapy is the use of alpha-1 antitrypsin protein (AAT) from the blood plasma of healthy human donors to augment (increase) the alpha-1 levels circulating in the blood and lungs of Alphas diagnosed with emphysema. The therapy is administered by a weekly intravenous infusion.

Alpha-1 Clinical Resource Centers

Clinical Resource Centers (CRCs) are located throughout North America and 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.

Alpha-1 Research

The Alpha-1 Foundation has invested $54 million to support Alpha-1 Antitrypsin (AAT) research and programs. Research projects have been conducted at 100 institutions in North America, Europe, the Middle East, and Australia. The level of research activity in AAT is at an all-time high and holds much hope for the future for individuals diagnosed with AAT Deficiency.

Alpha-1 Lung Disease

Know the signs and symptoms of Alpha-1 lung disease.

Alpha-1 Liver Disease

Know the signs and symptoms of Alpha-1 liver disease.

Testing for Alpha-1

The Alpha-1 Foundation encourages testing for Alpha-1 among those at high risk for this genetic disorder. Early diagnosis can help an Alpha consider different lifestyles, professions or other personal decisions that could maintain or improve their health.

Participate in Research

The Alpha-1 Foundation Research Registry at the Medical University of South Carolina is a confidential database of Alphas and Alpha-1 carriers across the country who are willing to participate in research.

Find an Alpha-1 Specialist

Finding an "Alpha doc" — a doctor who is knowledgeable about Alpha-1 — can be a challenge sometimes.

Support Groups

The Alpha-1 Foundation Support Group Network is a collective of more than 80 affiliated support groups including four Virtual Support Groups.

Patient Information Line

The Patient Information Hotline, operated by Cathey Horsak, Director of Community Programs, is available free to Alphas, their families, caregivers, healthcare providers, or anyone affected by Alpha-1. Call 1 (800) 245-6809.

ATS Breathing in America Book

The Breathing in America: Diseases, Progress, and Hope compilationbriefly describes respiratory diseases and the progress that is being made in the quest to find their cures.

ATS Patient Information Series

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one's personal health care provider.