From Diagnosis to Advocacy: Karen’s COPD Story

Posted on June 24, 2024   |   

This article was written by Jamie Jarrard, BA.

"I'm going to live the best life that I can live, and I'm going to advocate for others."

When Karen Deitemeyer was diagnosed with COPD, she was angry.

In 1991 her doctor warned her that if she did not take care of herself, she would likely develop emphysema. She took this advice to heart and quit smoking. She thought she'd done everything right to avoid chronic lung disease, but soon noticed she couldn't walk as fast as her friends, and couldn't climb stairs or carry groceries without getting winded.

10 years later a pulmonologist told her she had COPD.

"It was scary at first," Karen recalled. "But that was before pulmonary rehabilitation."

Karen was surprised by her diagnosis because she believed that if she quit smoking, she could avoid COPD. Instead, she learned that the disease can affect anyone, even those who haven't smoked. Karen decided she would not live in fear and would learn everything she could about COPD.

She dove headfirst into pulmonary rehabilitation, which is a supervised medical program that helps people who have lung diseases live and breathe better. Pulmonary rehabilitation taught her how to take care of her health, the importance of exercise, and how to take her medications.

But Karen wanted to do more to help others. She recognized that most people don't know what COPD is, even though COPD is one of the leading causes of death.

Karen made advocacy her mission. She hopes that COPD awareness will be as successful as breast cancer research and awareness.

She also stresses the importance of community, suggesting that if you or a loved one is diagnosed with COPD, you should join COPD360 Social, Oxy Talk, and the COPD Foundation Facebook group. All these communities offer support and shared experiences, which Karen said have been vital for her.

"The COPD Foundation has enabled me to speak up for others...has given me a purpose in life," she says. "We need to advocate for ourselves."

She also says her daughter, Ingrid, has been a "marvelous help," supporting Karen with her treatments and as she travels to advocate for COPD research and care.

Karen's advice for others who have been diagnosed is simple.

"Don't give up. Do all you can to help yourself."

She also suggests finding a pulmonology rehabilitation program, joining the COPD Foundation, and donating to the COPD Foundation if you are financially able.

"We're looking for a cure," Karen says. "Help us find that cure."

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