Alpha-1 Association Support Groups – A Haven for Patients with Alpha-1 and COPD
By Cathey Horsak
Director of Community Programs & Outreach, Alpha-1 Association
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic disorder affecting approximately 1 in 2,500 people. It is often misdiagnosed as COPD or emphysema. Approximately 90% of the known population is lung affected with the remaining 10% being liver affected. The Alpha-1 Association was formed in 1991 by empowered Alpha-1 patients who had formed local Support Groups throughout the country and wished to unite in a national organization to provide other Alphas support and education. The Association’s network of Support Groups is now one of the largest in the nation of individuals affected by Alpha-1 and COPD.
The secret to the success of our Support Network is the dedication of our leaders and their desire to help others. “Support Group Leaders help people connect with each other, share experiences and learn about their health issues and how to better manage them,” says Marlene Erven, Executive Director of the Alpha-1 Association. In the beginning, our Support Group Leaders were encouraged by physicians involved with an NIH Study of Alpha-1 patients, and more importantly, fueled by patient’s desperate need to connect to others suffering from the same ailments. Key volunteers helped to organize a basic structure for our support groups. They developed resource materials and guidelines on how to organize, run and publicize a support group. Telephone support was the first method of mutual support for most in the Alpha-1 community. Telephone trees were established by several support groups to pass on information.
Support Groups within the Alpha-1 Community have flourished and proliferated across the country. Standardized guidelines, educational resources and financial support for groups have helped to build consistency and continuity. Currently there are 76 Support Groups throughout the U.S. plus four virtual groups that meet by telecall providing specialized support to pre and post transplant patients, parents of young children affected by Alpha-1, caregivers and a forum on Timely Topics. Support Group Leaders meet by telecalls and participate in webinars to share important information, on-going training, and a forum for sharing best practices.
The reason someone becomes a Support Group Leader today in 2012 is really no different than it was in the late 1980’s when Alpha-1 Support Groups first started. Ask any Support Group Leader. They all possess a strong motivation to share their experience, to reach out to another Alpha, and to create awareness about Alpha-1 and COPD. Helen Nichols, Support Group Leader in Billings, MT says “My passion is giving people knowledge so they can deal with their life situations.” Helen’s father was diagnosed in 1970 but no one else in the family was tested because her mother was healthy. Years later, her brother died at 42, and her mother learned she was an Alpha ZZ. “I wish my family had been given more knowledge. That would have alleviated a lot of suffering.” Helen has made it a life mission to provide that knowledge to other Alpha families in her support group and beyond.
Julie Swanson, Support Group Leader in Kansas City, MO attended the Association’s first National Education Conference in 1991 and has attended many conferences since that time. Julie says, “there is an instant feeling of a new found extended family” when one Alpha meets another. “Our early beginnings were humble, with a small group of Alphas just wanting to connect with one another and share information. They made a path where one didn’t exist. I am thankful and proud of our pioneers and am ever grateful to the people who had vision and drive to evolve our organizations into the well-oiled machine they are today. The torch continued to pass from Alpha to Alpha to assure that no Alpha feels alone and to assure that our voices will continue to be heard.”
Starting a support group can be daunting, but there are a variety of ways that Alpha-1 Support Group Leaders can recruit members for their groups: the Association contacts its members in the leader’s area, leaders reach out to Pulmonary Rehab programs, contact pulmonologists, enlist the help of nurses and respiratory therapists, and contact and work with local lung associations.
The Support Network of Alpha-1 Association reaches more than 4,000 patients with Alpha-1 and COPD through its support groups, patient hotline and education programs. It is a stronger and more effective advocate for patients because of its Support Group Network and because of those individuals who step up and say, “I want to become a Support Group Leader.”
Alpha-1 is a genetic disorder that can cause lung and or liver disease in adults and liver disease in children. The American Thoracic Society recommends that all individuals diagnosed with COPD be tested for Alpha-1. For more information about Alpha-1 or the Alpha-1 Association support network or, please visit our website at www.alpha1.org.