Stroke Death Falls NEWS-12-30-02More than 50 percent of stroke patients and caregivers report anxiety and frustration when the stroke’s cause is undetermined, or “cryptogenic,” according to a new survey from the American Heart Association/American Stroke Association.

Every year, about 800,000 Americans have a stroke and about 200,000 of those are considered cryptogenic. The survey was completed in the spring and found that only 20 percent of patients and caregivers report receiving information for cryptogenic stroke at the time of diagnosis. Statistics show cryptogenic stroke patients have reason to be concerned: A prior stroke is the No. 1 risk factor for a second stroke.

Educating patients and families about cryptogenic stroke and diagnostic options is why the AHA/ASA, with support from Medtronic, launched the Cryptogenic Stroke Initiative.

The initiative released on Wednesday a new patient guide on cryptogenic stroke. The guide includes information on diagnosis, secondary prevention information and support resources.

“Through the initiative, we’re informing cryptogenic stroke patients about their condition and helping them to work with their healthcare team to prevent a second stroke,” said Mary Ann Bauman, M.D., chair of the American Stroke Association Advisory Committee. “We know that focusing on these patients will help us save lives from stroke, which is the fifth-leading cause of death in the U.S. and a leading cause of severe, long-term disability.”

The initiative is designed to help patients like Bill Benedict, 79, from Ithaca, New York.

Benedict suffered two “mini-strokes,” or transient ischemic attacks known as TIAs.  After his second mini stroke, Benedict’s cardiologist suggested it might be caused by atrial fibrillation, a rapid or irregular heartbeat. AFib, which can be tricky to diagnose, increases stroke risk up to five times. A small, insertable device that continuously monitors heart rhythm detected AFib a few months later and Benedict now manages his condition with medication.

Although AFib is one of the many likely causes of cryptogenic stroke, only 12 percent of patients were told that was a possible cause of their stroke. Other common causes for investigation include Patent Foramen Ovale, a hole between the heart’s chambers and thrombophilia, a blood clotting disorder.