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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

By ACHA on 12/21/2012 11:05 AM

By Amy Verstappen
ACHA President/CEO

Every November, I plant an amaryllis. Amaryllis are magical plants whose giant flaming flowers arrive straight out of “Jack and the Beanstalk.” Plant the fist-sized bulb, and watch as the sprout peeks up, slowly growing into a stem wider than your thumb. In a few weeks, a bulging bloom appears and travels up more than a foot on the thick, green stalk. Finally, the flower opens in all its glory, a wonderful addition to the New Year.

As ACHA approaches its 15th birthday in October 2013, it strikes me that ACHA is like an amaryllis. It began with a sprout: A small group of passionate patients and family members, dedicated to improving the lives of congenital heart survivors.

By ACHA on 9/28/2011 9:52 AM

By Amy Verstappen
ACHA President/CEO

Last week, I gave one of the toughest speeches I have ever given in my life. What made it so tough was not that it was to a room full of Congressional staffers, although that certainly didn’t help. Nor was the biggest challenge the fact that there might be press there, or that I would be sharing the podium with some of the smartest people on the planet when it comes to congenital heart disease.

What made it so tough was that I was actually going to have to get up and talk personally about my own journey with CHD. Two days before the briefing, I discovered that my original small role as Q and A moderator had been expanded, and I had eight minutes to talk personally about living with CHD.

By ACHA on 9/6/2011 12:50 PM

By Amy Verstappen
ACHA President/CEO

I am sitting in the airport in Los Angeles, on my way back from a wonderful trip visiting with HeartKids Australia, an organization that invited me to help kick off their planned expansion into adult-directed activities. I left highly impressed with both the HeartKids organization, which is well-funded and well-organized, and the ACHD care in Australia, which seems to be the same. One of the gifts of running ACHA is invitations to visit other countries and learn more about what living with CHD looks like in other places. Often I am reminded that each heart patient’s journey is as profoundly affected by their birthplace as by the shape of their funky heart.

By ACHA on 8/5/2011 11:09 AM

By Amy Verstappen
ACHA President/CEO

The joke in my family is that I never met a bureau I did not want to move. Although none of us have an athletic bone in our bodies, of my five sisters I am by far the most physically active. I am lucky enough to have had a pediatric cardiologist who, even back in the 1960s, believed in self-regulation. Told to do whatever I wanted “until my body said stop,” I took this instruction quite literally. When playing tag, my signal to stop was my heart pounding so loud I could not hear, combined with the distinct urge to both faint and vomit.

By ACHA on 7/28/2011 8:23 AM

By Amy Verstappen
ACHA President/CEO

As President of ACHA, there have been a few peak moments where it really feels like, “We did it!” Last week was one such moment, when I traveled from Philadelphia down to D.C. to be present as the Social Security Administration (SSA) added seven congenital heart conditions to those fast-tracked for disability payments.

Spend a few days around congenital heart patients and you quickly realize that the disability system is a big problem. Although our members are often severely debilitated by their CHD, our conditions barely exist in the current decades-old review system. Members routinely report multiple rejections and years of fighting to get benefits. Disability payments, though woefully small, can be an essential lifeline for those too sick to work. Because we live in a country which perversely insists on tying health insurance to employment, being too sick for a full-time job often means no coverage.