Life Path of the Heart
By Jane Kendall
Photography by Christian Lee
It is said that passion is the heart of every successful venture. For Trudie Lobban, the heart is her passion. It has been more than 20 years since her 10-month-old daughter, Francesca, began having “fainting spells” for no apparent reason. Terrified at what was happening, Trudie visited countless medical experts to find an answer. Finally at age 3, it was discovered that she has a rare heart condition Reflex Anoxic Seizures (RAS), which causes the heart to stop for short periods. RAS is one of many heart rhythm disorders that fall under the umbrella of arrhythmias, which cause the heart to beat irregularly, too fast or too slow, and can have devastating effects. They affect the electrics or rhythm of the heart (as distinct from heart attacks, which are caused by blockages in the heart vessels). They sometimes present no symptoms, but they are always treatable, if detected.
Trudie was determined to find answers and to reach out to similarly affected families. She immediately started a support group to heighten public awareness of RAS, gather information to aid research into the cause, and find effective treatment and a cure. Her search culminated in the founding of three global reaching non-profit organizations, dedicated to providing information and support for patients and medical professionals dealing with heart rhythm disorders.
In 1993, she established STARS (Syncope Trust and Reflex Anoxic Seizures), which brought together pediatricians, geriatricians, neurologists and cardiologists to form the STARS Medical Advisory committee. The Arrhythmia Alliance, a coalition of charities, patient groups, healthcare professionals, Department of Health, government and industry allies was founded by Trudie in 2004. In 2006, she created the first Heart Rhythm Congress, which offered a wealth of exhibitions, meetings, live cases, courses and conferences for professionals, patients and caregivers. In 2007, she launched the Atrial Fibrillation Association,following the demand from both patients and clinicians worldwide.
The Heart Rhythm Alliance is established in 40 countries, advocating for greater awareness and understanding of arrhythmias, helping patients and medical professionals and influencing policy. Its mission includes educating people to check their pulse for arrhythmias, advocating for defibrillators in public places and training for the public. Her contributions to books and medical papers, service on multiple medical boards, as well as presentations at international conferences fosters her quest to improve heart health, provide expedient and accurate diagnosis and treatment and save lives.
The following are symptoms you might experience if you have an arrhythmia or heart rhythm disorder: palpitations, racing heartbeat, or syncope (slow heartbeat that momentarily stops and you experience fainting episodes or unexplained loss of consciousness). If you have had any unexplained loss of consciousness, you should go to your doctor for an EKG to rule out a heart rhythm disorder. You should “know your pulse.” Your pulse is the indicator of regular heart rhythm. Check it often, after 5 minutes of rest (and no caffeine or nicotine beforehand). Average normal pulse rate is 60-100 beats per minute. Fluctuations naturally occur with activity and rest. Keep a record. If the beat is fast, slow, and/or irregular, have an evaluation with your physician. Atrial fibrillation (AF) causes the heart to beat erratically. You will experience palpitations and feel exhausted. When this happens, your blood can form clots and cause a stroke. Symptoms of fainting can lead to sudden cardiac arrest. Sudden cardiac arrest kills more Americans than lung cancer, breast cancer, and AIDS combined. With CPR and defibrillation (AED) the person can often be brought back to life.
Trudie is recognized as a world-renown expert and patient representative. In 2009, she was awarded an MBE (Member of the British Empire), an honor bestowed by the Queen of England, for her services to health care. In June, she was bestowed the title of FRCP, Fellow of the Royal College of Physicians. Her work has been lauded by the likes of Tony Blair, former Prime Minister of the UK and Sir Roger Moore. A woman of indomitable strength and spirit, Trudie is a shining example of what one can do to find answers where there seem to be none, and in the process, afford hope to millions all over the world.
Trudie and her staff are available to speak to women’s groups, men’s groups, schools, and any other organizations interested in learning how to treat arrhythmias. Volunteer opportunities abound to be trained as a presenter and help spread the word.
Call: The local office at 843 785-4101
Write: AFA-US and STARS-US P.O. Box 5507, Hilton Head Island, SC 29938
Detailed patient information is available: on the organization’s websites.
Stars US (Syncope Trust and Anoxic Seizures): www.stars-us.org
Arrhythmia Alliance (The Heart Rhythm Charity): www.heartrhythmcharity.org
Atrial Fibrillation Association: www.atrialfibrillation-us.org