Our ACHA bloggers cover many topics relevant to the CHD community. 

The Power of Camp

by Allie Gasiorowski on Tuesday, Apr 10, 2018

A few years ago, on the last night at Camp Odayin, a camp for kids with heart conditions, campers and staff were asked to write down one word to describe what Camp Odayin means to them. Some of the answers were: Camp is… Understanding. Friends. Awesome. Belonging. Memories. Freedom. Relief. Sisterhood. Steady Heartbeat. Euphoria. Unity. Family. Home.

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What Do You Know About Your Heart?

by Peter R. Ermis, MD on Thursday, Mar 29, 2018

What do you know about your heart? This is a question I typically ask when I encounter a new patient in our hospital’s adult congenital cardiology clinic. I ask that question hundreds of times each year and am met with a wide range of responses. While I sometimes have a young adult who can list off all of his or her congenital heart disease (CHD) diagnoses and tell me the details of every surgical detail, I am more often left with a shrug of the shoulders and a glance over at the patient’s parents.

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My Name Is Clare Almand and I Have CHD (Part 2 of 2)

by Clare Almand on Thursday, Mar 22, 2018

Note: To read Part 1 of Clare’s post, click here.

When I last left you, I was talking about being more open about my heart condition and sharing it on a larger scale—“fulfilling my purpose,” if you will. So here’s what I’m doing: I’ve collaborated with a dozen amazing women—writers, actors, and directors—and the first weekend in May we’re putting on a women’s perspective show in Los Angeles. We’re all writing and performing pieces about our lives: where we come from, the issues that are important to us, and the events that have shaped us

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Remembering Stephen Brabeck, MD

Friday, Mar 16, 2018

Today we are sharing some thoughts and memories about Stephen Brabeck, MD, who we recently learned has passed away. A former member of both ACHA’s Board of Directors (BOD) and Medical Advisory Board (MAB) who practiced cardiology in California, he was also an adult who lived with congenital heart disease.

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Our Stories, Our Futures: Advocacy as a Lifelong Journey

by Ken Woodhouse on Tuesday, Mar 06, 2018

2018 marks the sixth year that I attended the Congenital Heart Legislative Conference in Washington, DC. Nearly 200 advocates from across the country—the largest number to date—descended on the nation’s capital for this annual event. Given the current political climate, like last year, I initially approached this year’s event with some apprehension and skepticism.

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Coping with My CHD: Finding the Balance

by Emily Moore on Friday, Feb 23, 2018

This past weekend, my husband and I went on an amazing adventure. We traveled to Michigan’s Upper Peninsula (UP) to go dog sledding. As in, we get our own pack of dogs, hop on a sled and they pull us through the beautiful UP winter woods. It was one of the greatest experiences of my life.

One of the better things about our vacation was being off my phone and living in the moment and enjoying my company—Mike. Our lives are so busy down in the city with our 9-5 jobs, rush hour traffic, and the mindless adult tasks of never-ending laundry and doing the dishes, that sometimes I miss that time to just be. Just be with myself, and with Mike, in the moment.

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My Name is Clare and I Have CHD (Part 1 of 2)

by Clare Almand on Tuesday, Feb 13, 2018

I don’t consider myself a “sick” person.

If I count the number of years that I’ve had heart surgeries and procedures, I can say that I’ve spent most my life “healthy”—as in “not being hospitalized.” Only 11 of my 31 years have I had heart issues that needed treatment, either medicinal or surgical. This ratio of “healthy” years to “sick” ones is an important part of my identity. And because I don’t consider myself sick, I don’t tell people regularly about my chronic illness.

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Because of CHD

by Deb Flaherty-Kizer on Tuesday, Feb 06, 2018

None of us wanted congenital heart disease. None of us wanted to endure the countless doctors’ visits, surgeries, and limited activity that often accompany CHD. However, looking back over my 60 plus years living with CHD, I have been able to find teachings and blessings.

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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.

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