"She was the type of person that once you met her you wanted to be around her. She loved life," said Kim Zimmerman, founder, Carol's Voice.
But in June of 2008, Carolyn Dywan was gone. Her family says she died in her sleep just a couple of days after returning from the hospital.
For several years Dywan had been dealing with depression. But an autopsy revealed she also had cardica arrhythmia and severe heart disease.
Family members say the news was shocking because she didn't have typical symptoms of heart disease and basic testing revealed nothing threatening. But it turns out her body had been sending up a red flag for years.
"In 2005 is when she started have these very bizarre, unexplained falls," said Zimmerman.
Zimmerman says her mom was passing out fairly frequently and the episodes were chalked up to the depression. But the cause, according to Zimmerman, was actually a little-known symptom called cardiac syncope.
"Syncope is the sudden loss of blood pressure and heart rate causing someone to lose consciousness," said Dr. Kousik Krishnan, cardiac electrophysiologist, Rush University Medical Center.
Dr. Krishnan helps run the Rush syncope clinic. He explains that there are a number of benign situations that can cause syncope; for example, emotional stress such as seeing blood or sudden changes in body position such as standing up too quickly. These episodes are not considered life threatening.
Cardiac syncope is less common but much more serious. People tend to pass out for no obvious reason. But the cause may be hidden
. "Cardiac syncope is structural or electrical or plumbing problem with the heart that leads to passing out," said Dr. Krishnan.
Dr. Krishnan says in women cardiac syncope tends to be overlooked and often the symptoms are dismissed as anxiety.
Angela Danno knows this all too well. For years, the young mother was fainting on a weekly basis without any obvious triggers. Even though she had heart surgery as a baby she says doctor after doctor dismissed her episodes.
"Some of them told me it was in my head or just there was nothing wrong with me," said Danno.
At Rush they used a tiny implantable heart monitor to record Danno's fainting. They discovered scar tissue on her heart was causing an arrhythmia which made her black out. Surgery fixed the problem.
"Cardiac syncope really could be a sign of something more dangerous going on with the heart and really should warrant more extensive evaluation," said Dr. Krishnan.
Zimmerman wants more women and doctors to know about cardiac syncope. That's why she has started Carol's Voice, a non-profit organization in honor of her mother who she says spent her life helping others and in a sense will now continue to do so.
"As of May 15 so far, we know of four people we helped receive a diagnosis of cardiac syncope which just is amazing to me," said Zimmerman.
According to doctors, isolated incidents of fainting are usually nothing to get worried about. They say frequent episodes may require special testing to determine the cause.
Kousik Krishnan, MD
Rush University Medical Center
1725 W. Harrison St.
Chicago, IL 60612
Phone: (312) 942-5020
Fax: (312) 942-4039
American Heart Association