Cardiomyopathy is a disease that affects the heart muscle and unfortunately, there is no cure for this condition. The treatment we offer focuses on reducing the symptoms you may have. It will also depend on the severity of the symptoms you are suffering from.
Treating cardiomyopathy is very important. It helps to reduce the risk of developing a potentially lethal heart rhythm disturbance.
The treatments you will be offered range from taking medication to a heart transplant.
Heart function improves over time in a small number of patients. But there is still a risk of the cardiomyopathy returning.
You may need medication to control your symptoms. This could include:
The doses or types of medicines you will take will be monitored by the ICC cardiology team, as well as possible side-effects.
Some people with cardiomyopathy experience changes to their heart's rhythm. They find that medications can’t get this under control. If this is the case, they may need a permanent pacemaker to help control the heart’s rhythm.
If there is evidence of a dangerous heart rhythm, there is a higher risk of having a sudden cardiac event or even death. We may recommend an implantable cardioverter defibrillator (ICD). This works by recognising a dangerous rhythm and shocking the heart back into a normal rhythm.
Surgery and transplantation
Certain patients with cardiomyopathy may find that a surgical procedure helps with their symptoms. But surgery may not be right for everyone and all surgeries carry risk. We will only consider surgery after we have tried other options.
For a small number of patients, a cardiac transplant is an option we will offer. This is because they still have severe symptoms, even after trying other treatment options.
For cardiac transplants, adults will be referred to Harefield Hospital and children to Great Ormond Street Hospital.
Cardiomyopathy is a disease that affects the heart muscle. Cardiomyopathy can often be caused by a genetic mutation, and can therefore run in families affecting one or many members, at any age.
About the cardiomyopathy team
The cardiomyopathy team at the Trust is made up of consultants and specialist nurses.
Dr Antonis Pantazis, consultant cardiologist
Dr Sanjay Prasad, consultant in heart failure and imaging
Professor Piers Daubeney, consultant in paediatric cardiology with a special interest in cardiomyopathy
Dr John Baksi, consultant cardiologist
Dr Sanjay Kumar Kohli, consultant cardiologist
Dr Alex Lyon, consultant cardiologist
Mr Olivier Ghez, consultant paediatric and congenital surgeon
Dr Maria Kinali, honorary consultant paediatric neurologist
Dr Leonie Wong, paediatric electrophysiology consultant
Specialist nurses (Royal Brompton Hospital)
Catherine Renwick, lead nurse for cardiomyopathy, aortopathy and channelopathy
Bethan Cowley, adult ICC clinical nurse specialist
Fortunate Rusike, adult ICC clinical nurse specialist
Charlene Casey, paediatric clinical nurse specialist
Lucy Green, paediatric clinical nurse specialist
Emma Ashby, ICC nurse
Louise Parker, ICC nurse
Rachel Mackay, adult ICC clinical nurse specialist (on maternity leave)
Suad Warsama, adult ICC clinical nurse specialist (on maternity leave)
Specialist nurses (Harefield Hospital)
Alison Pottle, nurse consultant in cardiology
Julie Bellchambers, clinical nurse specialist
Fiona Eggenton, clinical nurse specialist
Royal Brompton Hospital
If you have any queries regarding your appointment date, please call: 020 7352 8121, extension 2919.
If you have any other questions or concerns, please contact the ICC clinical nurse specialists by calling 020 7352 8121, extension 2205 or 8823.
If we can't take your call, please leave a message and a nurse specialist will call you back.
If your appointment is at Harefield Hospital, please contact the clinical nurse specialists by calling 01895 828 729.
Cardiomyopathy UK– information and support for families with cardiomyopathy
Cardiac Risk in the Young- supports young people diagnosed with potentially life-threatening cardiac conditions and offers bereavement support to families affected by young sudden cardiac death
British Heart Foundation – supporting those suffering from heart conditions
Heart Research – information and advice for young people growing up with a heart condition
Children’s Heart Federation- a children’s heart charity dedicated to helping children with congenital or acquired heart disease and their families in Great Britain and Northern Ireland