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.
Medications
You may need medication to control your symptoms. This could include:
- beta blockers
- ACE inhibitors
- Diuretics
- Anti-arrhythmics
- mineral/vitamin supplements.
The doses or types of medicines you will take will be monitored by the ICC cardiology team, as well as possible side-effects.
Implanted devices
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.
Consultants
- 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
Contact us
Royal Brompton Hospital
Appointments
If you have any queries regarding your appointment date, please call
Phone: 020 7352 8121 extension 2919
Clinical nurse specialists
If you have any other questions or concerns, please contact the ICC clinical nurse specialists. If we can't take your call, please leave a message and a nurse specialist will call you back.
Phone: 020 7352 8121 extension 2205 or 8823
Harefield Hospital
If your appointment is at Harefield Hospital, please contact the clinical nurse specialists.
Phone: 01895 828 729
Further information and resources
Cardiomyopathy UK
Cardiomyopathy UK offers information and support for families with cardiomyopathy
Website: www.cardiomyopathy.org
Cardiac Risk in the Young
Cardiac Risk in the Young (also known as CRY) supports young people diagnosed with potentially life-threatening cardiac conditions and offers bereavement support to families affected by young sudden cardiac death.
Website: www.c-r-y.org.uk
British Heart Foundation
British Heart Foundation supports people suffering from heart conditions
Website: www.bhf.org.uk
Heart Research UK
Heart Research UK offers information and advice for young people growing up with a heart condition.
Website: www.heartresearch.org.uk
Children's Heart Federation
Children's Heart Federation is a charity dedicated to helping children with congenital or acquired heart disease and their families.
Website: www.chfed.org.uk