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. The group should provide services to support patients. 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. Created and maintained by Mona Barmash for The Children's Health Information Network.