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Advocating for CHD awareness

February 11, 2012
By Cindy Votruba , Marshall Independent

For more than eight years I've been writing here and there about congenital heart defects. The thought of having an "imperfect"?heart never crossed my mind while growing up. I recalled getting easily winded when I'd have to run for gym class, but nothing extreme. I was basically symptom-less.

Then I turned 31.

Discovering a heart defect as an adult was tough enough. But I couldn't even imagine what most of the folks I've met online who faced surgeries as young children, even as babies, have gone through. Several have pacemakers, many have had more than one surgery. Others have to use oxygen on a regular basis. And quite a few are already on disability and they are younger than I?am.

Becoming a statistic of sorts was a bit eye-opening for me. Heart defects affect eight out of every 1,000 newborns, which range from mild to severe.

And that's why we who have some form of congenital heart defect needs to advocate. Not just during CHD Awareness Week (which is from Feb. 7-14), but all year round. I am definitely not an expert on all things CHD, but I know what it's like to be diagnosed with one of the many conditions. It's scary at first, especially if you're looking at open-heart surgery, the great unknown, but you learn to be resilient.

In the budget reconciliation bill that was passed by both the House and Senate back in December, $2 million was appropriated to the Centers for Disease Control and Prevention (CDC) to address epidemiological and longitudinal data on individuals of all ages with congenital heart disease. It was amazing news and I?hope news like this continues to happen.

Since 2005, heart-related organizations have a Lobby Day, where people with CHD meet with their legislators, lobbying for support for CHD surveillance and research. It takes place in Washington, D.C. every year, usually in the late winter/early spring. Unfortunately I?haven't had the time or resources to attend, but I?definitely stand behind what the attendees do. They're a voice for me and the countless others who have CHD.

For this year's Lobby Day, participants will ask legislators to continue funding the CDC so they can learn more about prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes, and to increase funding to the National Institutes of Health (NIH) for CHD research. New this year, members of the House will be asked to join the Congenital Heart Caucus.

But how can one person make a difference? Mainly by telling my story. Now I've told my heart story on more than one occasion in this newspaper, no need to rehash it. All I?can do is continue my story. How I?keep on keeping on. I don't let having a heart defect slow me down.



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