Visiting Nurse Service and Upstate HomeCare Host Better Breathers Group

Alpha-1 Antitrypsin Deficiency (Genetic COPD)

Rochester, NY – August 23, 2010: Visiting Nurse Service of Rochester and Monroe County, Inc. (VNS) and Upstate HomeCare will host September’s Better Breathers Group Wednesday, September 1, at 5 p.m. at 2180 Empire Blvd. Join presenter Diane Cameron and learn about Alpha-1 Antitrypsin Deficiency, an inherited genetic COPD disorder that can cause liver and lung disease in children and adults at any age. Alpha-1 cannot be diagnosed by symptoms or by a medical examination; a blood test is needed to confirm this diagnosis.

Cameron leads the Rochester, NY, Alpha-1 Association Support Group, assisting newly diagnosed Alphas and/or their caregivers in our region improve their quality of life through developing an enhanced, healthier sense of personal identity and a connection with the larger Alpha-1 Community. The Alpha-1 Association Support Group Network is a collective of more than 75 affiliated support groups including four Virtual Support Groups (Alpha-1 Families, Caregivers and Pre and Post Transplants and Alphha-1 Buddies).

Better Breather meeting attendees can learn about the latest research and development in dealing with shortness of breath, tightness in the chest, suffering from Emphysema, Bronchitis, COPD or other respiratory disease, as well as learn tips for better breathing.

Better Breathers is an educational/support group for pulmonary patients and their families. Meetings are held monthly featuring guest speakers, group discussions followed by a question and answer period, and “caring and sharing.” Educational hand-outs, pamphlets and a growing library are available to members. Meetings are held at 2180 Empire Blvd., Webster, from 5 to 6 p.m. on the first Wednesday of each month; no cost to attend. For more call Julie Salo, RN, at 787-8353.

VNS is a not-for-profit, Medicare-certified home health care agency. Licensed by the State of New York, VNS has been providing quality care since 1919. As one of the largest full-service home health providers in the Rochester area, VNS conducts more than 600,000 visits to 13,000 patients annually. VNS is a member of the Home Care Association of New York State, Inc. and the National Association for Home Care. For more information, please call 585-787-2233 or visit www.vnsnet.com.

Alpha-1 Facts

Common signs/symptoms of disease caused by Alpha-1 include shortness of breath, wheezing, chronic cough and sputum (phlegm) production (chronic bronchitis), recurring chest colds, jaundice, swelling of the abdomen (ascites) or legs, vomiting blood (from enlarged veins in the esophagus or stomach), decreased exercise tolerance, non-responsive asthma or year-round allergies, unexplained liver problems or elevated liver enzymes, and bronchiectasis.

• Alpha-1 has been identified in virtually all populations and ethnic groups. It is estimated that about 1 in every 2,500 Americans have Alpha-1.
• Individuals with Alpha-1 may remain healthy throughout their lives. Early diagnosis and avoidance of risk factors, such as cigarette smoking, can help prevent Alpha-1 from causing disease.
• An estimated 20 million people have one normal and one defective AAT gene. People with one normal gene and one defective gene (for example MZ) are called “carriers”. Carriers may pass the defective gene on to their children.
• Alpha-1 can lead to lung destruction and is often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD)
• Alpha-1 can only be diagnosed by having a blood test.
• Alpha-1 is the most common known risk factor for emphysema.
• About 3% of all people diagnosed with COPD may have undetected Alpha-1.
• Alpha-1 can lead to liver disease. The most serious liver diseases are cirrhosis and liver cancer.
• The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that all individuals with COPD be tested for Alpha-1.
• The Alpha-1 Foundation supports testing for individuals at risk for Alpha-1 Antitrypsin Deficiency.

Source: http://www.alpha1.org/whatisalpha1/a1facts.php