About us
We are GUCHs, Grown-Ups with Congenital Heart defects. Teenagers and grown-ups with congenital heart defects are a group of patients which is fast-growing in numbers due to advances in cardiac surgery and intensive care in the last forty years.
- Approximately one child out of 100 (1%) is born with a congenital heart defect; 75% have simple defects and do not need long-term treatment; 25% however suffer from a complex congenital heart anomaly which requires special medication or surgery.
- In the past, many people affected by a complex heart defect died early, often in infancy. Thanks to huge medical advances, up to 90% of the affected people reach adulthood even with a complex heart defect (in Switzerland yearly about 500 people).
- Approximately 25‘000 adults with congenital heart defects live in Switzerland today, with an increasing trend. Most of them have had cardiac surgery when they were young. They are repaired, but not yet healed.
- Complex heart defects often need several surgeries as a child, teenager or adult. Scars on the heart, artificial limbs and implants, as well as cardiac pacemaker require lifetime follow-up care.
- Grown-ups with congenital heart defects often face special problems in their job or private life and need competent help and advice. GUCH-doctors and specialists start to arise and in some countries specialised GUCH-programmes have already been established. However, we still have a way to go!
ToughHearts Conference
We are GUCHs, Grown-Ups with Congenital Heart defects. In 1999, we set up our own association in Switzerland, CUORE MATTO, which regularly organises meetings, lectures and seminars for its members who are all affected by a congenital heart defect.
At present, we have the great pleasure to be host of the EuroHearts Conference in Switzerland, the Tough Hearts Conference 2014 which started on July 20th 2014 and ended on Friday 25th 2014.
The Tough Hearts Conference 2014 takes place in Baar in the canton of Zug / Switzerland, and welcomes delegates from many different GUCH-organisations from Europe and around the world.
The Conference Programme includes interesting and informative lectures and round tables of GUCH-specialists and cardiologists, instructive workshops and exciting leisure activities. Being together with GUCHs from so many different places and backgrounds is essential and enriching for all of us.
Beside very concrete medical advice and news concerning GUCH-issues, the Tough Hearts Conference 2014 focuses on the dealing with constraints and sacrifice and the living with pain and emotional distress, all subjects which characterise a life with a congenital defect or disease. The importance of the doctor-patient-relationship and the fact that they learn from each other is also highlighted during this conference.
In addition, the Tough Hearts Conference 2014 is a jubilee conference as it is 20 years since it has taken place for the first time and 10 years for the last time in Switzerland.
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