By Kathleen Hutchinson
30 Jul

It’s All About Community

Monday, July 30, 2018

I have found many of us share the same story: We thought we were “fixed,” then it turns out we weren’t. We go on to have life-changing surgeries later in life, uncovering hidden traumas we thought were buried forever. We thought it was OK to see a general cardiologist, then we learned the hard way—we need a specialist.

Right now, there are those who are just realizing they weren’t “fixed” and are facing these very things. They are scared and unsure of what to do. Their lives are being turned upside down, like so many of ours have.

Sound familiar? For those of us in our late 30s and older, the technology wasn’t there when we were children. Boy, how times have changed. We are living longer, which is a good problem to have, but the system sometimes isn’t quite sure what to do with us.

This is why being a part of the ACHA community is so beneficial. By joining in and getting involved, you learn you are not alone and meet others who have been exactly where you are. It is an opportunity to support one another through these challenging times.

ACHA has been hosting Meet and Greet events around the country, which are planned by volunteers, for the past few months. I volunteered to coordinate the Los Angeles Meet and Greet and assisted in organizing the Meet and Greet for Orange County, CA.

Both events were, in my eyes, a success and amazing! We had such a great time at the Orange County Meet and Greet, and everyone was so engaged and not on their phones that we forgot to take pictures (the photo pictured here is from the Los Angeles Meet and Greet).

Why amazing, you ask? Many reasons: I met new people, I believe I made new friends, I felt part of something bigger than myself, I met others who were unconditionally supportive and as a bonus, I was out of the house socializing, and experienced two new restaurants.

Community is important. We have much to learn about our diseases, and what better way than to learn from each other? Through our individual experiences, we have an opportunity to learn something outside of doctor’s office. How can we share our experiences if we’re not involved?

There are many ways to get involved, but I’d like to highlight two ways:

  • If you are interested in coordinating a Meet and Greet in your city, contact Misty Sharpe, ACHA’s Membership & Volunteer Coordinator, at msharpe@achaheart.org.
  • To directly support others with your same CHD, consider becoming a Heart to Heart Ambassador—there are just a few days left before the submission deadline of August 1.

 If you aren’t interested in volunteering, I encourage you to attend ACHA-hosted events, like the Meet and Greets, in your area. For example, ACHA is hosting a CHD Awareness Night with the Los Angeles Angels on September 15, 2018. Look for more of these types of events in a city near you and join in!

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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.

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