Cardiomyopathy is a disease that affects the heart muscle. It is often caused by a genetic mutation and it can run in families. The condition can affect one or more members of the family, and at any age.
When you have cardiomyopathy, the effect it will have on you will be different from others. Some people may have many symptoms while others display none at all.
There is no cure, corrective surgery or corrective treatment for cardiomyopathy at the moment. But we can help you to manage your symptoms to help lead as normal a life as possible.
Types of cardiomyopathy
There are different types of cardiomyopathy that you may be diagnosed with.
Dilated cardiomyopathy (DCM)
Patients with DCM will have an enlarged and dilated heart. This may stretch the heart muscle and make it thinner than it should be. It affects how well the heart pumps blood out and can lead to heart failure symptoms, or arrhythmia. People with DCM often have a family member who has the disease, even if it is undiagnosed. For others, DCM can be the result of an infection, coronary artery disease, alcohol or drug abuse.
Hypertrophic cardiomyopathy (HCM)
HCM causes the dividing wall between and around the ventricles of the heart muscle to thicken. This thickening happens, particularly in the left ventricle. Although the heart itself can stay the same size, HCM can cause scarring within the heart muscle. This puts patients at risk of abnormal and potentially dangerous heart rhythm. People with HCM often have a family member who has the disease, though it may not have been diagnosed yet.
Athletic (athlete's) heart, is a non-pathological condition. It is usually found in people who like strenuous or endurance exercise and causes the heart to become enlarged. Although it is considered generally benign, it can sometimes hide genuine cardiomyopathy, or be mistaken for HCM.
Arrhythmogenic right ventricular cardiomyopathy (ARVC)
ARVC is a less common form of cardiomyopathy which replaces heart muscle cells with fat cells and scar tissue. This can reduce the heart’s ability to pump blood around, leading to an increase in developing an abnormal and potentially dangerous heart rhythm.
Most patients with ARVC will often have a family member who has the disease, although this may not have been diagnosed yet.
Left ventricular non-compaction
This occurs when a layer of the heart muscle is not compacted, which gives it a spongy appearance. Like DCM, this can sometimes dilate and thin the heart muscle.
Less common forms of cardiomyopathy
- restrictive cardiomyopathy - the heart muscle becomes too stiff to pump blood effectively
- post-partum cardiomyopathy - a DCM which develops during the final stages of pregnancy, or just after birth
- Takotsubo cardiomyopathy - also known as broken heart syndrome
Cardiomyopathy symptoms
Symptoms, if you have any at all, can include:
- shortness of breath, on exertion or at rest, recurrent chest infections
- coughing up sputum or blood
- palpitations, and an awareness of your heart beating faster or in an irregular way
- chest pains, and/or angina pain
- abnormal heart rhythms - called arrhythmias
- fainting or near fainting
- dizziness
- swelling to the face, abdomen or extremities
- Undue tiredness
- reduced exercise tolerance
In some cases, the very first sign or symptom of cardiomyopathy is sudden and unexpected death.
Find out more about our cardiomyopathy clinics.
About the cardiomyopathy team
The cardiomyopathy team at the Trust is made up of consultants and specialist nurses.
Consultants
Dr John Baksi, consultant cardiologist
Professor Piers Daubeney, consultant in paediatric cardiology with a special interest in cardiomyopathy
Mr Olivier Ghez, consultant paediatric and congenital surgeon
Dr Sanjay Kumar Kohli, consultant cardiologist
Dr Alex Lyon, consultant cardiologist
Dr Antonis Pantazis, consultant cardiologist
Dr Sanjay Prasad, consultant in heart failure and imaging
Dr Maraisa F. Spada, associate specialist in paediatric cardiology and cardiomyopathy
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 (aortopathy and Marfan)
Sami Collins, 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 (high risk pregnancy)
Specialist nurses (Harefield Hospital)
Alison Pottle, nurse consultant in cardiology
Julie Bellchambers, clinical nurse specialist
Sam Harrison, clinical nurse specialist
Contact
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.
Harefield Hospital
If your appointment is at Harefield Hospital, please contact the clinical nurse specialists by calling 01895 828 729.
See the answers to frequently asked questions about our inherited cardiovascular conditions service.
Further information
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
Frequently asked questions
These are some of the most asked questions we get from our patients:
I have a question about my outpatient or clinic appointment at Royal Brompton Hospital?
If you have a question about day case appointments in the CRBU or cardiology department, call 020 7351 8121 ext. 82919. If your question is about a follow-up appointment, call 020 7351 8121 ext. 88011.
Where is my clinic letter?
These are sent by the secretary for your consultant, and you, your GP and professionals outside Royal Brompton Hospital will receive a copy. To contact Dr Prasad's PA 020 7351 8121 ext. 2495 for letters for patients seen within the cardiomyopathy clinics (Dr Prasad and Dr Daubeney). For patients seen by Dr Till, call Dr Till's secretary on 020 7351 8121 ext. 8569. For patients seen by Dr Pantazis, call Dr Pantazis' secretary on 020 7351 8121 ext 2491.
I have a question about my investigation appointment?
New patients coming to the day case clinic will have some routine investigations. This will include:
- echocardiogram
- 24/48 hour holter monitor
- MRI scan
- exercise test
- routine blood tests
The ICC schedulers will arrange these for you on the day of your appointment. You may not need to have all these investigations, we will arrange for only what you need. If you have a question about these investigations, call the ICC schedulers on 020 7351 8121 ext. 82919. We will discuss your results with you during your appointment, and if the results are not immediately available, we will include them in the letter to your GP. If you would like to discuss your investigations results after your appointment you can contact the clinical nurse specialist team on 020 7352 8121 ext. 82205 (children) or ext. 88823 (adults). Following your initial consultation, we may request some investigations on an outpatient basis. Your consultant's secretary will arrange these, so if you have any questions about these, contact the relevant secretary via the switchboard on 020 7351 8121.
I need parking at Royal Brompton Hospital - who do I contact?
There are some limited car parking spaces at Dudmaston Mews. These can be reserved, subject to availability by calling 020 7351 8012. There is also other pay and display parking facilities in Foulis Terrace, just off the Fulham Road and in Cale Street. There is also an NCP car park on Sydney Street, which is a short walk away from the main hospital entrance. As parking is limited, where possible use public transport. If you or your child requires hospital transport please speak to your GP to arrange this. Find out more about getting to the hospital.
My child, relative or I have symptoms that could be related to their/my heart - who do I contact?
Contact the paediatric ICC clinical nurse specialists by calling 020 7351 8121 ext. 82205 to discuss your child's symptoms. For adults experiencing symptoms call the adult ICC clinical nurse specialists on extension 88823. If there is no answer, leave a message and someone will get back to you. Leave your name and a brief message, including your date of birth and hospital number if you know it. You can also speak to your GP for advice. If you have symptoms or illness that you believe are not related to your heart, contact your GP.
My child, relative or I is being admitted to a ward in Royal Brompton Hospital - who do I contact about this?
Paediatric schedulers arrange admissions to our children's wards (Rose ward and paediatric intensive care). You can contact them by calling 020 7351 8121 and ask for bleep 1256. Adult schedulers arrange admissions to our adult wards (Paul Wood, York and Alex wards). You can contact them on 020 7351 8121 and ask for bleep 1166. They will be able to answer questions about yours, your child or family member's admission. If you are looking for clinical information, they will forward to the appropriate health professional.
The cardiologist recommended a new prescription or a change of prescription during my last visit, what happens next?
Following your outpatient appointment, we will send a letter to your GP. It will ask them to increase the dose of your existing medication or to start a new medication. Once your GP receives this letter, they should provide you with a new prescription which can be dispensed from your local pharmacy.
A family member or members need familial screening - how do I organise this?
Your family member will need to ask their GP for a referral letter to the ICC service at Royal Brompton Hospital. We can give you a letter for your family member to pass to their GP to help the referral. Contact the ICC clinical nurse specialist team for this letter. Referrals should be addressed to the named consultant and sent to the ICC schedulers. Find out more about referring a patient to the ICC service.
My child, relative or I am scheduled for a procedure/operation at another hospital or surgery. The physicians there need information from Royal Brompton or Harefield Hospital about my care - what do I do?
The physician at your local hospital should communicate directly with the relevant medical team at Royal Brompton or Harefield Hospital for information or extra advice. Ask them to contact your consultant cardiologist through their respective secretary.
My child, relative or I have been admitted to a hospital A&E department and the doctors there need information - how do they get this?
Ask the doctors taking care of either you or family member in the A&E department to contact the on-call cardiologist here at Royal Brompton Hospital for information or advice.
My child, relative or I am currently an inpatient in another hospital and are waiting to be transferred - can the nurse specialist team help with this? Unfortunately, the ICC nursing team are unable to ease or speed up the transfer process. This is done through the doctors and bed co-ordinators at each hospital. Ask the medical team or nurses looking after you or your relative to contact the on-call cardiologist or bed co-ordinators at Royal Brompton Hospital.