All About the STARS Organization

Rebecca Smith, Executive Director of STARS Hilton Head Island, South Carolina
Rebecca Smith, Executive Director of STARS Hilton Head Island, South Carolina
An unexplained loss of consciousness can be a very scary experience, especially when its causes cannot be explained or diagnosed. Syncope affects a million and a half Americans each year, and unfortunately, more than 40% of cases are misdiagnosed or go undiagnosed. Therefore, the STARS (Syncope Trust and Reflex Anoxic Seizures) organization was created in order to offer patients, families, and medical staff with support and information. STARS, a national non-profit organization, is committed to improving the quality of life for individuals and their families coping with blackouts, unexplained losses of consciousness, and syncope. This can include syncope disorders, reflex anoxic seizures (RAS), and postural tachycardia syndrome (POTS). Their main focus is educating and supporting sufferers, their families, the medical community and general public by offering a support system where they can obtain knowledge and understanding of these conditions. Background STARS was founded 15 years ago in the United Kingdom by Trudie Lobban, after her daughter, Francesca, was diagnosed with reflex anoxic seizures, a form of syncope. Trudie was dismayed to find there was no support or information regarding her daughter’s condition at that time. Her pediatric neurologist, Professor J.B.P. Stephenson, suggested she start a support group for others who were experiencing the same frustrations. In her quest to support and educate others on syncope, STARS was created. Because of the tremendous growth and demand for support and information from sufferers in the United States, STARS US was established in October 2007. Trudie Lobban, Founder and CEO of STARS, wrote that they really had no choice but to set up an operation in the United States. “Syncope can be extremely difficult to diagnose, leaving sufferers, parents and doctors in a terrifying limbo — not knowing what’s wrong and living in constant fear of another attack,” she says. STARS is now global, receiving 8,000 requests from people every month. The organization continues to focus on the ever-increasing needs of U.S. families and doctors facing the specter of unexplained blackouts. About Syncope Disorders Facts on syncope: • Syncope affects 1.5 million Americans each year; • It accounts for $10 billion in doctor and hospital expenses each year; • 50% of patients leave the hospital without a clear diagnosis; • 10% of falls by the elderly are due to syncope. Syncope is often dismissed as simple fainting, but for a significant number of patients, the blackout is anything but simple. Complex syncope (neurocardiogenic syncope or vasovagal syncope) often appears just like a “seizure” or “fit,” leaving many patients with a tragically incorrect diagnosis of epilepsy. It is very important to make sure that syncope and epilepsy are distinguished from each other — this is a vital component of the STARS educational effort. There are many different types of syncope. Cough syncope, which is rare, follows a paroxysm of coughing. Swallow syncope sufferers experience a drop in blood pressure and lowered heart rate in response to the action of hot food/fluids passing from the throat to the stomach; the autonomic nervous system is not able to compensate for this increase in pressure, which decreases the flow of blood to the heart. During heat syncope, a person suddenly loses consciousness because the heat causes blood vessels to dilate, which in turn causes a drop in blood pressure. Orthostatic hypotension is caused by a drop in blood pressure that occurs when a person has been standing for a while or changes from a sitting to a standing position. Blood tends to pool in the legs, keeping a normal amount of blood from being returned to the heart, thereby preventing a normal amount of blood from leaving the heart and going to the body. When a momentary drop in blood flow to the brain occurs, the person faints. The most common type of syncope is vasovagal syncope, also known as neurocardiogenic syncope or reflex syncope. A variety of situations stimulate the vagus nerve, which leads to a slowing of the heart rate and dilation of the body’s blood vessels. Because of this, less blood gets to the brain, and fainting occurs. Pain and emotional stress can trigger vasovagal syncope in susceptible people. This condition can also occur in many members of the same family. Vasovagal syncope can be triggered by many different stimuli. Although seeing blood is a common trigger, simply standing immobile may also trigger a syncope attack. Being in a warm environment, not having eaten, not having drunk sufficient liquids, or not taking enough salt in one’s diet are all other factors that increase the chances of setting the reflex in motion. Symptoms vary from patient to patient and from one faint to another. The most common symptoms are lightheadedness, dizziness, and nausea. Accompanied with these symptoms may be feelings of being hot, clammy or sweaty and sometimes experiences of visual and hearing disturbances. Some people get little to no warning of symptoms prior to loss of consciousness. The cause of syncope is sometimes hard to discover because the patient’s symptoms are often very infrequent with no detectable abnormality between episodes. For patients experiencing syncope, the tests they will undergo will be determined by what the doctor thinks is the most likely underlying cause. Such tests may include blood tests, chest x-ray, ECG, or EEG. If the doctor suspects that the fainting episode may be related to the heart, then more detailed heart investigations will be necessary to exclude potentially dangerous conditions. Other tests may include an echocardiogram, Holter monitoring, tilt table testing, or electrophysiological testing. Treatment of syncope is aimed at dealing with the underlying cause. As there are potentially many different causes for syncope, treatment options may differ significantly from one patient to another. Treatments may include a pacemaker implantation, medication, lifestyle changes, and exercise. Reflex anoxic seizures occur mainly in young children but can occur at any age. Any unexpected stimulus, such as pain, shock, or a fright causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become deathly white, the body to stiffen and the arms and legs to jerk. After about 30 seconds, the body relaxes and the heart starts beating again. RAS attacks may occur several times per day/week/month. The attacks appear to come in batches. Because of the symptoms, RAS is often misdiagnosed as temper tantrums, cyanotic breath holding or epilepsy. A correct diagnosis of RAS is aided by a good description from a witness, establishing the trigger, keeping a diary of events, and consulting a doctor who is fully aware of the patient’s condition and takes a detailed history. Routine tests, mainly to rule out any other underlying condition, may include ECG/EKG, EEG, event monitoring, an implantable loop recorder, or tilt table testing. There is no cure for RAS, but advances have been made with the use of a pacemaker; cardiac pacing has shown to improve the quality of life for some individuals. There are several medications that are also safe and effective that have prevented most reflex anoxic seizures in the short term for children having severe and frequent attacks. Benefits of the Organization STARS aims to provide support and information for individuals and families living with and in distress from syncope and other non-epileptic seizures. Their goal is to advance syncope education to the medical professional and general public, helping to decrease discrimination and stigmatic implications against patients and their families. STARS aims to promote research and increase publications on the treatment and disease management of syncope conditions. STARS offers many benefits for patients and medical professionals, including: Patient information booklets provide an invaluable source of information and support for patients. These help both the patient and the doctor reach a correct and speedy diagnosis. All of the STARS educational booklets have been approved by a panel of international medical experts. Helpline. Toll-free helpline acts as a lifeline for parents and sufferers whenever they need advice or reassurance. The helpline is available to anyone (regardless of age) who is seeking support and education of syncope conditions. Website. The website is an important source of information for patients, caregivers, and the general public, offering related news articles, educational booklets in downloadable format, case studies, upcoming events, an “Ask the Expert” feature, and conference listings. It is also a means of communication via message boards (for both youth and adult). The adult boards are a way that caregivers and sufferers can talk about syncope; it is a comfort for them to know they are not alone. The moderated youth message board acts as the same — children and adolescents can chat about school and the difficulties that arise from their conditions. Newsletters. These offer sufferers, caregivers, medical professionals and the general public information on treatments, condition management, shared news articles, stories of misdiagnosis, and event listings. Conferences. Regional, national, and international meetings are available to the medical professional, patient and caregiver. Syncope Awareness Days, scheduled in different cities/towns in the U.S., are available to the medical professional, patient and caregiver. The morning sessions are designed just for the medial professionals, highlighting the latest treatments, diagnoses, and devices, led by experts of syncope conditions. Afternoons are designed just for the patients and caregivers. They are given the opportunity to “ask the expert”, hear others’ experiences, gather information on how to educate their child’s school on syncope, and talk to others who have been experiencing the same difficulties. The “No Show” Ball is a national campaign that STARS hosts each year. With the United States being so vast, it is difficult to have an event that everyone can participate in as a group. The “No Show” Ball was designed to allow supporters of STARS to feel as if they have participated in an event with other supporters. STARS encourages supporters throughout the U.S. to host fundraising events in their local communities. These events are very important as they raise awareness of syncope conditions in their community. The money raised from these events helps STARS continue to support sufferers and their families throughout the United States. What Can Be Done to Help Educating the health care professional is an important part of the STARS mission of education and awareness. It is imperative that the family physician become aware of syncope. No faint is a simple faint. It is STARS’ goal to ensure that this vital component of awareness and education is delivered to the primary care physician. In increasing awareness and education of syncope, it is our hope the patient will be referred down the correct medical path for a speedy and correct diagnosis. STARS is and can be an important resource to the medical professional, offering medical papers on related subjects, conferring with other medical professionals, and providing conferences and informational booklets. It is our hope that the medical professional will utilize STARS as an important resource for their patients. For more information or to receive STARS materials, please contact Rebecca Smith at 843-785-4101 or rsmith@stars-us.org For more information, please visit: www.stars-us.org www.stars.org.uk