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How a Support Group Can Help You With Your Asthma

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When Donna Jean Matlach was diagnosed with severe asthma eight years ago, she knew she couldn’t go it alone.

“I told my doctor, ‘I need to be able to talk to someone who has gone through what I’ve gone through,’” she recalls, citing the years it took to get a correct diagnosis and her anxiety about experiencing a severe attack. “But at the time, there was no online network. Nothing.”

That’s when Matlach’s doctor, Sally E. Wenzel, MD, director of the University of Pittsburgh’s Asthma Institute, introduced Matlach to one of her longtime patients, Brenda Young. Together, Matlach and Young founded the Severe Asthma Foundation, an organization devoted to connecting adults with severe asthma across the United States and educating them about the condition and how to it.

“My dream came true,” says Matlach, a native of Buffalo, New York, who now lives in Fountain Hills, Arizona, with her husband, who is a dentist.

The Severe Asthma Foundation, which partnered with the Allergy & Asthma Network, a nonprofit education and advocacy group for people with asthma, allergies, and related conditions, has more than 250 active members, who network both online and by phone, offering each other advice and support. Members also share their personal stories — highlighting the difficulties many older adults face in getting a proper diagnosis — on the Severe Asthma Foundation’s online forum.

Growing Support for Adults With Asthma

Today, Matlach and Young’s group is one of dozens across the country that offer support services for people with asthma. The Asthma and Allergy Foundation of America offers its own online community, as well as a directory of local support groups throughout the country.

“Sometimes you feel like a ticking time bomb, waiting for an attack,” Matlach says. “It helps to know that others have faced the challenges you have and found a way to live a healthy and happy life with severe asthma.” Dr. Wenzel says this fear and anxiety is the primary reason many adults with asthma seek the help of support groups. In her experience, however, too few ultimately decide to remain actively involved. She suggests that they may feel embarrassed about their condition.

“Going public in a support group can be hard,” Wenzel says. “But most of the patients I see feel anxious, depressed, isolated, or alone.” That’s why she believes the vast majority of adults with asthma would benefit from extra support.

Unfortunately, there hasn’t been a great deal of research to date showing the benefits of support groups, either online or in-person, for adults with asthma. However, a study published in 2005 in the journal Chest found that educational outreach through local community groups in two New York City neighborhoods helped people better recognize the symptoms of asthma and the signs of an attack. The outreach efforts improved the quality of life of the people with asthma who participated by helping them to better manage their symptoms. The authors of the study also found that the outreach efforts reduced the number of emergency room visits and hospitalizations associated with asthma in the two neighborhoods.

“The more severe the disease becomes and the more it impacts a person’s life, the more they want to have the support of someone who is walking the same path,” says Tonya Winders, the president and CEO of the Allergy & Asthma Network, which assists both in-person and online support groups for people with asthma and runs its own online support group, called Health Unlocked: USAsthma. “People with more severe forms of asthma definitely want to engage with others, learn more about the disease, and exchange ideas about the best ways to manage it.”

John Leaman, cofounder of the Asthma-Emphysema Self-Help Group in New York City, agrees. His group began meeting in 1990, and meetings today draw anywhere from 10 to 50 attendees with respiratory diseases. In addition to providing members with emotional support, the group addresses many day-to-day needs. Members compare notes on doctors and hospitals, as well as medicines and alternative treatments. They even accompany one another to medical appointments and, if needed, make hospital visits. Guest speakers at meetings have included physicians and religious leaders. All the meetings are free.

Leaman suggests that because asthma is often considered a “childhood disease,” adults with the condition tend to be underserved by the health care community and other support services. That’s where belonging to a support group can help. After all, asthma doesn’t affect only children. One in eight New York City adults reports having been diagnosed with asthma, according to the city’s health department.

“Doctors tell adults with asthma to get out and do things,” Leaman adds. “That’s why our group meets in restaurants and coffeehouses. It gives us an excuse to get out and break bread together. And we’ve learned that people don’t only want help for themselves, they want to help others.






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Date: 02.12.2018, 19:16 / Views: 52244