Canadian Congenital Heart Alliance

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Canadian Adult Congenital Heart (CACH) Network
1st Congenital Cardiac Patient Conference

It's official. The 1st Annual Congenital Cardiac Patient Conference, held in Toronto on May 13, 2006, was an outstanding success. Over 300 people (congenital patients and their families) attended a full day of informative and interactive talks presented by experts in the field of adult congenital heart defects. Jeanine Harrison, nurse practitioner at the Toronto Clinic, and many helpers, worked hard for months to make this a successful educational and supportive event. They definitely succeeded and we thank them for all their hard work.

I think most of us would agree that the conference not only educated us, but also motivated us to take action. As Dr. Gary Webb so eloquently said in his presentation, "The political power lies with you, the patients and families". It is really up to us to raise awareness, and to make the government and organizations such as Heart and Stroke take notice.

Here are some facts, distilled from Dr. Erwin Oechslin's opening remarks:

There are an estimated 20,000 adults in Ontario with CHD who are at moderate to high risk. These patients need to be followed closely at a clinic that specializes in adult CHD, for the rest of their lives.
There are another 15,000-20,000 low-risk patients who should be seen at least once in a specialty adult CHD center.
Each year we can add approximately 400 new adults to the list.
In short, while the pediatric population remains stable, the adult population is growing, because more and more children are surviving into adulthood.
At the Toronto clinic alone, there are approximately 5,000 patients being actively followed. This number is estimated to rise to 7,000 by 2013.
And yet - there is no concrete funding, manpower, or awareness to counteract the increase in numbers of patients over the next years.
We are asking for the same level of commitment and treatment that pediatric patients receive, and on par with adults with acquired heart disease (i.e. high cholesterol and high blood pressure, smokers, etc.

As Dr. Webb stressed, it is up to us, the patients, to lead the way. We must not continue to rely on the doctors and government to take care of us. Our future health is in our hands - scary, but true!

The CCHA is eager to rally the troops and provide a focal point for our awareness-raising efforts. Please visit our website regularly for updates on our initiatives. As well, we will continue to use e-mail as our primary means of communication, so watch for more news in your inbox.

Click on the links below to read highlights from the following presentations:

Opening Remarks, by Dr. Erwin Oechslin

Congenital Care in Canada and the World, by Dr. Gary Webb

Coping with your Heart Condition, by Adrienne Kovacs, Ph.D., C.Psych.

Why Exercise? by Arwa Saidi

Congenitally Corrected Transposition of the Great Arteries, by Dr. Khalid Al Najashi

Transposition of the Great Arteries: Arterial Switch, by Dr. Laura Dos-Subira

We will be posting links to the other conference presentations in the upcoming months, so please check back regularly.