Chronic Lyme Disease Summit 2

Vaso-vagal syncope, fainting, blackouts - contact STARS

NEWS RELEASE
BLACKOUTS AND SYNCOPE NON-PROFIT
LAUNCHED IN UNITED STATES
A million and a half Americans each year can now access
a new source of support and education.

South Carolina, Oct 2007- STARS an international non-profit organization has announced that it has established STARS-US, a national non-profit organization that is dedicated to supporting United States families and medical professionals to improve the diagnosis and care of Syncope conditions.

Affecting a million and a half Americans each year. Syncope is the medical term for a faint or blackout caused by a sudden lack of blood supply to the brain. Tragically, more that 40% of Americans with Syncope are either misdiagnosed or go undiagnosed. Syncope usually results from a heart rhythm or blood pressure regulation problem.

If you have Syncope, your life is turned upside down, you’re prohibited from driving, and you could fall unconscious at anytime, perhaps even losing bladder control. The embarrassment and the anxiety can ruin lives yet, if diagnosed correctly, most patients can be simply and effectively treated.

Since founding STARS in the UK in 1993, Trudie Lobban has seen a tremendous growth in the demand for information from US syncope sufferers. “We 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, let alone the consequence. I started STARS because it began to affect my daughter, Francesca, when she was very young. I felt as though Francesca was on the verge of death every time it happened. No-one could explain what was going on, or recommend a treatment. Today we receive 8,000 requests from people in just that position every month. Such a large proportion of these come from the US, we are delighted that we’re now able to open a dedicated organization, focused just on the ever-increasing needs of US families and doctors facing the specter of unexplained blackouts.”

FACTS on Syncope in the United States:
· Syncope affects 1.5 million American patients for the first time each year.
· It accounts for 10 billion dollars in doctor and hospital expenses each year.
· Yet up to 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 (Reflex Anoxic Syncope or severe Vasovagal Syncope) often appear just like a “seizure” or “fit”, this leaves 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 STARS’ educational effort around the world.

What is Reflex Syncope or RAS (Reflex Anoxic Seizures)?
RAS occurs mainly in young children. 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, complexion to become deathly white, the body to stiffen and the arms and legs to jerk. After 30 seconds the body relaxes and the heart starts beating. RAS attacks may occur several times per day/week/month. The attacks appear to come in batches. There is no cure, but advances have been made with the use of a pacemaker where cardiac pacing, a treatment, has shown to improve the quality of life for some individuals. Atropine, atropine sulfate, safe, effective drugs that have prevented most Reflex Anoxic Seizures in the short term for children having severe and frequent attacks.

About STARS.
STARS a registered 501(c)3 tax-deductible non-profit organization is committed to improving the quality of life for individuals and their families coping with Syncope conditions. Whose aims are to address the disadvantages, discrimination and stigma experienced by people living with these afflictions. STARS main focus is on education and supporting sufferers, their families, the medical community and general public by creating a support system where they can obtain knowledge and understanding of Syncope conditions. STARS will also promote research into the diagnosis and management of Syncope, to publicly publish the results to alert patients, the general public and the medical community.

Contributing to STARS.
STARS is seeking private and institutional contributions to fund educational and training programs, creating and distributing educational tools, training materials, supporting and educating sufferers, their caregivers and medical professionals through a toll free helpline, website, regional, national meetings, newsletters, monthly e-bulletins and funding scientific research.

STARS Sponsor:
STARS has attracted support in the form of board participation from prominent individuals in the, corporate business, philanthropic and medical communities, such as Daniel Beach, Director of Communications, Medtronic Cardiovascular, Professor Blair Grubb, Cardiologist, Toledo University Hospital, Ohio, Mrs. Linda Kadesch, Hilton Head Island, South Carolina, Dr. Phillip Saul of the Children’s Heart Program of South Carolina at MUSC.

For more information, or to contribute to STARS contact:
Rebecca Smith, Executive Director, (843) 785-4101, rsmith@stars-us.org, www.stars-us.org

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