new CHD suport group

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Thursday, May 5, 2005 3:15 AM CDT

Adult Congenital Heart Disease patients are a very unique group. Having survived into adulthood many patients are now faced with special concerns :medical, financial, emotional. Many patients have been discriminated against or "set apart" because of their condition, and a social/support group would likely help patients to find others with whom they can relate, and share encouragement.
In addition, the formation of a support group specifically designed for such patients might help ease the difficult transition from pediatrics to adult heart patient responsible for continuing cardiac care and participating in their own treatment. Further, a group like this could draw attention to the need for adults with chd to be seen in a tertiary care facility specializing in treatment of such patients.

Adults with Congenital Heart Disease need to establish a network of information and support. ACHD'ers often feel isolated, because in many cases, they have never met anyone with a similar condition. They also feel set apart from the main population, because many feel that they have been discriminated against or left out in a variety of forums ranging from the work place and school to insurance companies, to doctors who are not adequately trained to treat a patient with such a complex or rare condition or defect. By joining together as a group, ACHD patients could share information and experiences, which would help them to get a more realistic perspective of their condition and limitations and abilities. It would also provide a source of emotional support.

Many patients have difficulty making the transition from pediatric patient to adult patient. They have become passive about their condition and their treatment, and many do not have a good understanding of their situation. By discussing congenital heart disease with others, patients would have a forum where they could become more educated about their condition, treatment options, and "risky behavior".

The group should provide services to support patients. For example, there should be: social events, guest speakers or presentations, patient matching, in hospital support,newsletter.

There should be support for pediatric chd patients. The group should help support pediatric patients, possibly including the younger patients by hosting an annual event designed for them, and also by supporting programs such as summer camps.

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