32 posts tagged with Shone's Syndrome.

Getting Good at Transitions

by Emily Earhart on Tuesday, Jun 19, 2018

It’s that time of year again where every weekend is filled with graduations and weddings. For many people, summer represents a season of transition—the transition from high school to college, adolescence to adulthood, student life to work life, single living to co-living. All these summer transitions bring changes to ourselves and in our relationships with others.

Those living with congenital heart disease know transition well. We often talk about transition as “THE transition”—moving from pediatric cardiac care to adult cardiac care. Until recently there were no universally accepted medical guidelines for this transition. I always thought I would see my pediatric cardiologist my whole life. It wasn’t until I was 30 years old, married, and thinking about family planning that I found out there was such a thing as adult congenital heart cardiologists.

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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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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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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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Can We Just State the Obvious? CHD Stinks.

by Clare Almand on Wednesday, Sep 27, 2017

It’s funny that four years ago, I stopped writing posts for the ACHA Blog because I’d run out of topics. My health was stable and I had no new angle or insight on my CHD experiences that I hadn’t covered or had been covered by someone else. And there were no new problems to report. It’s funny because, guys, that is sooooo over! My heart is back to being a huge jerk.

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Empowered

by Allie Gasiorowski on Friday, Jun 09, 2017

I am one in 100. And after this past weekend at the Adult Congenital Heart Association’s (ACHA) 8th National Conference, I am also, proudly and passionately, one of 502. I am one person of the 502 people who attended this conference, who furthered our knowledge of congenital heart defects (CHD), met others with our same conditions, surgeries, limitations and backgrounds, and learned what we can do to advocate for ourselves and our heart family and make the Adult Congenital Heart Association the leading nonprofit serving the CHD community in the world. In the simplest of terms, after this weekend, I am amazed and empowered.

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My “Heart Family”

by Allie Gasiorowski on Thursday, Apr 27, 2017

Throughout the first 12 years of my life, I was presented with a few opportunities to meet other patients with congenital heart defects. There were no other young heart patients that I knew of at school, in my community theater family, or in my dance classes, but throughout my four heart surgeries, my family and I connected with patients in the hospital enduring the same everyday struggles.

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Thoughts on the Eve of My Eleventh Heart Surgery

by Clare Almand on Tuesday, Apr 04, 2017

Tomorrow, I’m having my eleventh heart surgery.* Whenever I’m about to have surgery, I go through the same emotions. Most of my feelings go back to how absurd it is that this is a normal thing in my life. The following is a mostly concise description of what I’ve been thinking about.

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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.