September 9, 2010 at 9:10 a.m.

Local woman brings national campaign message home; sharing her COPD trials and tribulations

Local woman brings national campaign message home; sharing her COPD trials and tribulations
Local woman brings national campaign message home; sharing her COPD trials and tribulations

A Chisago City woman is helping spread the word about a disease that is one of four leading causes of death and is the only one that's expanding in its prevalence.

Julie Knutson is out to educate, advocate and illuminate the public on facts about COPD. Her own diagnosis took a long-time-coming and now she hopes to spare others the frustrations and what if's that she experienced.

Knutson discovered she had COPD when her dad was a candidate for a liver transplant and she did what any loving family member would -- she went to the clinic to be tested as a donor. Knutson said she underwent about three rounds of specific blood tests and then learned "by accident" that she had inherited two negative genes causing Alpha 1 (a liver deficiency) and that she had inherited emphysema.

Knutson was bummed that she couldn't be a donor. On the other hand, she had finally gotten an answer to years of nagging suspicions about her inability to catch her breath.

She recalls she first sought medical help for respiratory difficulties when she was 37 or 38 years old. She lived on the third floor of an apartment building and just bringing in groceries would wipe her out. Was she just getting old, out-of-shape or what?

At that time she was mis-diagnosed with adult onset asthma.

Four years later the donor tests uncovered the emphysema, which along with bronchitis, are two types of COPD or Chronic Obstructive Pulmonary Disease. COPD is not just a hereditary illness, though, it can take hold through lifestyle and environment.

Knutson's lung function had decreased significantly from when she got the asthma diagnosis. "It went from 61 percent to 38 percent, I lost that much in those few years," she reflects.

She is now 48-years-old and uses inhalers and has weekly transfusions to slow her lung deterioration. "I consider myself medically retired," Knutson continued. "I don't like the word disabled."

Knutson shares her COPD story to help bring the message of the DRIVE4COPD campaign to the public.

DRIVE4COPD is a multi-year public health campaign. This year NASCAR and the country music industry are involved.

Events and campaign advertising feature celebs like driver Danica Patrick, who honors her grandmother who had emphysema, and Jim Belushi whose father had chronic bronchitis and an aunt who has it. Patty Loveless composed a song for the campaign in memory of her sister, who passed away with emphysema.

The campaign hosted COPD screenings at seven major car races this year. The DRIVE4COPD 300 was the first NASCAR nationwide series race of the season.

DRIVE4COPD also brought an education booth to the Minnesota State Fair. Between August 27 and Aug. 30 DRIVE4COPD offered health screenings and spread the word to state fair visitors stopping by the booth. Fairgoers could learn by riding the COPD shuttle, that takes riders on a virtual, microscopic journey into the body and demonstrates the damage COPD can cause to lung tissue.

FYI...

There's a five question screening tool that can be viewed on the website DRIVE4COPD.com which helps people determine risk for this disease. Information on the website encourages you to initiate a conversation with your doctor.

Knutson stresses this is an illness that can be treated.

"It creeps up on you," she says. For many, by the time they get appropriate care their breathing is seriously impeded.

"I am passionate about raising awareness," Knutson acknowledges. She's also testified at the state capitol before legislative committees who were considering revisions to state law for shipping certain medical products, and she's been active in promoting plasma derived therapies she's involved in. (She was a founder of a support group on Alpha 1 that meets at Fairview Medical Center, in Wyoming, as well.) She also speaks to professional groups such as respiratory therapists.

Knutson is not afraid to put herself forward for an important cause.

A factor that somewhat stifles understanding of COPD is something she hears all the time, that being 'you don't look sick.' It is an "unseen thing" so Knutson is even more determined to do what she can to make COPD visible and lessen its deadly impact. COPD kills more people than breast cancer and diabetes combined.

As for her dad, at the age of 70, doctors did find him a donor and literally within hours of his liver transplant, Knutson said he was looking and feeling better.


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