The NICCS website has resources for people affected by inherited cardiac conditions. The NICCS brings together experts from across Scotland. It’s part of the NHS and aims to improve services for inherited cardiac conditions (ICCs). It was set up to help coordinate services for people with – or suspected of having – inherited cardiac conditions. NICCS is a National Managed Clinical Network (NMCN). Network for Inherited Cardiac Conditions Scotland (NICCS) You may need to visit your family doctor to obtain a referral to a specialist service. Genetic testing is done for arrhythmias in Aberdeen and for cardiomyopathies in Edinburgh. These cardiac-genetic services link with the smaller hospitals in their regions. Genetic services in Scotland are managed by specialist hospital doctors in four regional centres: There is support available through psychological help and genetic counselling. Living with an inherited cardiac condition can be distressing for both those with the condition and their families. See our Living with a heart condition section for general advice on various aspects of living with a heart condition, like benefits, driving and going on holiday. Cardiomyopathy UK has some general advice. If you want to find out more, speak to your cardiologist. Research is, at present, still exploring what level of activity is right for the individual affected by an inherited cardiac condition, especially if they’re a young person. However, vigorous levels of exercise can be dangerous for people with inherited cardiac conditions. Sport and physical activity have many benefits. heart transplantation (in rare cases) – see heart surgery.implantable cardioverter defibrillators (ICDs) – see heart surgery.Treatmentsĭifferent conditions require different treatments or interventions, which include: Read about what to do in an emergency, in case you have a heart emergency. This is a condition which means there was an unexplained underlying familial heart rhythm that was not detected until there was an investigation following a death.īritish Heart Foundation has information on Sudden Arrythmic Death Syndrome and on genetic cardiac conditions and procedure following a sudden death.Ĭardiac Risk in the Young (CRY) has information on sudden cardiac death. You can get more information from Marfan Foundation Sudden Arrhythmic Death Syndrome (SADS) There is a 50/50 chance that someone with Marfan syndrome will have a child with the condition, but Marfan syndrome is relatively rare – around 1 in 5,000 people have the syndrome. Connective tissues provide support and structure to other tissue and organs. Marfan syndrome is an inherited – or genetic – condition that affects the body’s connective tissues. Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT).
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