This Support Group was started in 2006 by Lucinda McNerney in association with the Irish Heart Foundation. Based in Midleton, Cork. Lucinda and some of her other family members have Long QT Syndrome.

Long QT Syndrome is an inherited defect in the heart rhythm that predisposes to sudden fainting spells, dizziness, and palpitations and in worst cases seizures and sudden death. The name comes from the QT segment in the tracing on an ECG.

We are currently trying to identify people with Long QT who would like to be a part of the support group If you would like to get in touch with Lucinda or would like to be informed of up coming meetings and communications, please complete the feedback form or call 01 6685001.

What is Long QT Syndrome (LQTS)
LQTS is an inherited condition.  It is a disturbance of the heart’s electrical system, which causes heart rhythm problems.  A person with LQTS is prone to fainting spells, dizziness, palpitations and even sudden cardiac death.  These symptoms are caused by a very fast heart rhythm called Torsade de Pointes.  Symptoms happen suddenly and often without warning.  If you have LQTS it is important that you take your medication and follow your cardiologist’s instructions.  It is also very important to have family members regularly checked for LQTS by a doctor, even if they don’t have any symptoms.  Sometimes the gene carrying LQTS can be identified in a family, in which case identifying members with LQTS becomes much easier.

What does the name Long QT Syndrome mean?
The name comes from a measurement on an electrocardiogram (ECG) called the QT-Interval.   When a person with Long QT Syndrome has an ECG test, the QT-Interval recorded on the ECG is prolonged.   A small percentage of people with LQTS will have a normal ECG.

How common is Long QT Syndrome?
It is estimated that 1 person in every 5,000 has LQTS.  The condition is generally inherited.  Each child of a person with LQTS has a 50% chance of having the condition.  If you have Long QT Syndrome, your mother or father will also have the condition.

What are the symptoms of Long QT Syndrome?
A syncopal episode (Faint) is the most common symptom of LQTS.   But there are many other reasons for a fainting spell.  With LQTS, it is very important to look at family history.  LQTS symptoms generally present in young people (under 40 years) and thus a family history of sudden, unexplained death of young people or family members with a history of unexplained fainting spells is a very important consideration. 

A common faint usually gives warning signs such as, blurred vision or sweating just before the faint occurs.  However, a syncopal episode or faint due to LQTS is usually sudden and without warning.  It often happens during or shortly after some form of physical and emotional exertion.  This could be during exercise or, on hearing very good or very bad news.  Sudden noises such as alarm clocks and doorbells can also act as triggers.
 
Other symptoms of LQTS include dizziness and palpitations.  Unfortunately sometimes the first symptom of LQTS is cardiac arrest (when the heart stops beating) and sudden cardiac death.
Up to 50% of people with Long QT Syndrome never have any symptoms.  Therefore is it very important if you have LQTS that your close family members are regularly checked for the condition, even if they have no symptoms, as sudden cardiac death might be the first symptom.

Who should be tested?
All first-degree relatives of the person with LQTS should be tested for the condition.  A first-degree relative is a mother, father, brother, sister, son or daughter.  It is very important that the parents and grand parents of the affected person are tested so that other relatives at risk can be identified.
Relatives should be tested at regular intervals on the advise of their doctors.

How is Long QT Syndrome diagnosed?
LQTS is generally diagnosed by electrocardiogram (ECG). The machine records your heart’s electrical activity, which can show a prolonged Q-T interval.  An exercise stress test may also be used.  This measures your heart’s electrical activity while you are exercising.  A holter monitor records your heart’s rate and rhythm over 24 hours to pick up intermittent heart rhythm disturbances that may be missed by an ECG.

How is Long QT Syndrome treated?
All patients should be treated whether they have symptoms or not.  This is because sudden death may be the first symptom a person with LQTS experiences.  It is not possible to identify the patients who will and will not develop serious symptoms of LQTS.  Therefore all patients should receive preventative treatment.
The most common medication is Beta Blockers.  These medicines stop the action of hormones such as adrenaline that make the heart beat faster.  For most people with LQTS, medication is the only treatment required.  Some people may need devices such as pacemakers or ICDs fitted to help control dangerous heart rhythms.

How will LQTS Affect my life?

Sport
People with LQTS should avoid competitive sports and activities that place high physical demands on the body.  Physical activities such as walking, moderate hiking and biking, and golf are suitable.  However you should check with your medical professionals about your individual case.  If you have LQTS, it is also important to get advice on exercise in relation to your children, even if they have no symptoms. After treatment, it may be possible to resume certain sports, in consultation with your doctor.

Foods
There are some foods that can inhibit the effectiveness of the medication you are taking for LQTS.  Please check with your doctor and read the information sheet provided with your tablets for information on foods that might interfere with your medicine.

There are also some foods that can increase your heart rate, such as caffeine, and act as a trigger for symptoms of LQTS.  Caffeine is found in tea, coffee, fizzy drinks, high-energy drinks and in many over-the-counter cold & flu remedies and pain medicines.  Make sure to read the list of ingredients on foods, drinks and medicines.

Medicines
Some medicines can prolong the QT-Interval and should not be taken by people with LQTS.  You can get a full list of these drugs from web sites such as www.qtdrugs.org and www.qtsyndrome.ch  As new drugs are always becoming available, you need to check the list regularly.  Make sure that your doctors and dentists are fully aware of your condition and that they know there are many medicines that are dangerous for you to take.  Always ask your doctor before taking any new prescription or non-prescription medicine.

Long QT Syndrome Support Group

This support group is a voluntary group set up in association with the Irish Heart Foundation to provide information and support to people with LQTS and their families.  The support group wishes to create more understanding and awareness of the condition so that patients fully understand the implications of LQTS on themselves and their families. 

We particularly want to stress the importance of looking after other family members.  We know of so many families that have lost many young people through a lack of awareness of the hereditary nature of LQTS and a lack of understanding of the need to continuously monitor the children of people with LQTS even when there are no obvious symptoms.

If you would like to contact a member of the committee, please contact the Irish Heart Foundation 01 6685001

Useful Web Links:

Long QT Support Group: Contact the Irish Heart Foundation 01 6685001
Irish Heart Foundation Helpline:  helpline@irishheart.ie or call 1890 432 787
Irish Cardiomyopathy Support Group
Irish Sudden Cardiac Death in the young Support Group
Irish Implantable Defibrillator (ICD) Support Group
All of these support groups are also affiliated to the Irish Heart Foundation.  Further information can be obtained by contacting 01 6685001 or clicking the links above
Information on LQTS www.qtsyndrome.ch and www.qtdrugs.org
UK Sudden Adult Death Syndrome Support Group: www.sadsuk.org
UK Arrhythmia Alliance www.arrhythmiaalliance.org.uk