The Gitxsan Health Society has been working in partnership with Dr. Laura Arbour, MD, Professor, UBC Medical Genetics, on Long QT Syndrome Research with Gitxsan since 2006.
For more information about Long QT syndrome and Dr. Laura Arbour’s Long QT research study please click the link below. Long QT information can be found under the “Research” section under the heading “Impact of Long QT Syndrome on First Nations People of Northern British Columbia”. This website has links to Long QT information and support pamphlets as well as an update letter summarizing the progress and results of the Long QT study to date.
What is Long QT syndrome?
Long QT syndrome (LQTS) is a heart condition which may cause an abnormal heart rhythm that an lead to symptoms like dizziness, fainting, heart palpitations, seizures and in a very small number of people the heart may stop (cardiac arrest). About one third (1/3) of those with LQTS never experience symptoms, therefore many people may never know they have LQTS.
There are hereditary forms of LQTS. Non-hereditary forms of LQTS exist, which can be caused by other medical problems.
How is Long QT syndrome diagnosed?
When someone has LQTS, a certain part of the heartbeat (known as the “QT interval”) is typically onger than average. This can often, but not always, be seen on an electrocardiogram (ECG), a machine that measures the electrical pattern of the heartbeat. The diagnosis of LQTS may be made by a local physician or a cardiologist, after reviewing a patient’s ECG results and medical history.
Genetic testing is another way that LQTS may be diagnosed. This involves a person giving a blood or saliva sample from which tests are done to look at certain genes known to cause LQTS.
How is Long QT syndrome treated?
Beta-blockers (a type of heart medication) are the most common treatment and are effective in about 90% of patients with the most common form of LQTS (called type 1). Beta-blockers work by preventing the heart from beating too fast, which could trigger an abnormal heartbeat. In some cases an implantable defibrillator (ICD) may be placed underneath the skin to reset the heartbeat if it becomes irregular.
People who have Long QT syndrome should also avoid certain medications which are known to prolong the QT interval including some over-the-counter medications. Please check with your pharmacist for further information.
What causes hereditary Long QT syndrome?
In most people of Northern BC First Nations ancestry, LQTS is a problem caused by two known specific gene changes. Genes determine traits, such as blood type and eye colour. Some genes play a role in controlling the way the heart beats. A change in a gene can prevent that gene from working properly. If there is a change in one of several specific genes, it can predispose individuals to LQTS.
How is Long QT syndrome passed down in families?
LQTS is usually inherited, meaning that the condition can be passed from parent to child. When one parent has LQTS, there is a 50% (1 in 2) chance that each child they have will be predisposed to LQTS and a 50% (1 in 2) chance that each child will not be predisposed to LQTS. Therefore, in one family, many generations of both men and women may be predisposed to LQTS.
The impact of LQTS on First Nations people of Northern BC
In 2005, concerned community members asked researchers at the University of British Columbia (UBC) to address the question of why there seemed to be a high rate of LQTS in the Hazelton area of Northern BC. This led to a joint effort between community members and health care providers in Hazelton, and the UBC to learn more about LQTS in the Hazeltons.
Long QT is a rare inherited congential cardiac condtion characterized by a prolonged QT interval on a electrocardiogram (ECG).
Please click or enter on any of the following titles to learn more about Long QT Syndrome.
Article in the Canadian Medical Association Journal (CMAJ) Practice – Cases by Heather Jackson BSc, Lee-Anna Huisman MSc, Shubhayan Sanatani MD, Laura T. Arbour MSc MD
Long QT Syndrome – A Family’s Perspective Part 1: A story – Author, Lee-Anna Huisman, MSc
Long QT Syndrome – A Family’s Perspective Part 2: Testimonials, Author: Lee Anna Huisman, MSc with community members
List of meds/drugs that people with Long QT syndrome should avoid. Please click on the link below to see the list. Thank you.