Young stroke survivor: Leading the charge for changeby Mona Prufer
Amy Edmunds is an information junkie. She wants to have all the information available on a particular subject so that she can make educated choices in her life. So it was no surprise that, after suffering a stroke at age 43, she canvassed the Internet for data on young stroke survivors.
There wasn't much out there.
"They put me in a hospital room with an 86-year-old person [who had had a stroke], and let me tell you, we didn't have much in common," says Edmunds, a health communication instructor at Coastal Carolina University and coordinator of the student internship program.
Edmunds, who has been at CCU only a year, founded the organization Young Stroke Inc. and is planning the inaugural Young Stroke Expo, set for May 21, a collaboration with Georgetown Hospital System, Department of Health and Environmental Control (DHEC), CCU, the American Heart Association and the Medical University of South Carolina (MUSC). The daylong event includes a "Run, Walk and Roll" event, writers' roundtable and 12 breakout sessions on topics ranging from nutrition to intimacy issues for people under the age of 65 who have suffered strokes.
And there are plenty of people in that category.
In South Carolina, half of all doctor-diagnosed stroke incidences in 2009 affected patients between the ages of 18 and 65, according to DHEC. The coastal counties are part of the nation's Stroke Buckle, where stroke mortality rates are more than twice as high as the national average. Prior to 2005, for three decades South Carolina was ranked first or second in stroke mortality. In 2006, the ranking dropped to eighth.
"There is a public perception that strokes only affect older people," says Edmunds, who was having a conversation with her mother in her bedroom when her stroke occurred nine years ago. "I was doing everything right healthwise, but I still had the experience." Her symptoms included temporary blindness, short-term memory loss and repetition of a question to her mother, who realized something was wrong and dialed 911.
An ambulance was sent, and the Emergency Medical Services workers told Edmunds and her mother that she was having a reaction to some drugs she had taken earlier in the day following an outpatient procedure. They left, without Edmunds, but her mother, realizing things were not right, drove her daughter to the emergency room, where a doctor diagnosed her as suffering a stroke.
Edmunds was fortunate in that her stroke caused minimal lasting effects. She didn't have to have rehabilitation and only suffered memory loss of that day. She was placed on drug therapy for five years and had to take Coumadin, a widely used blood thinner that her 86-year-old father was also taking. "I was taking a higher dosage than he was. It gave us something to bond over," she says.
It was following the stroke that Edmunds, a graduate of Davidson College, began her quest for knowledge about young stroke survivors, but she was stymied at every turn. "I have a strong need for information, but when you start looking for literature on the subject, there is none," she says. "This country is 15 years behind countries like the United Kingdom or Scotland, which have centers and health professionals dedicated to these people. We're still adjusting to seeing 'young' and 'stroke' in the same sentence."
Edmunds has also been working on Senate Bill 588, a statewide legislative initiative for stroke care. There is currently no standardized, professional healthcare training for young stroke care, and young patients are often misdiagnosed with migraines or even substance abuse. She went before the state Senate in February to share her story and press for reform. The bill has passed the Senate, but now has to go through the House.
With the Young Stroke Expo, Edmunds hopes to reach out to a population that has been ignored and underserved. "I get requests [for information] from across the country, and it tugs at my heart," says Edmunds. "No one has ever counted us, no one has ever put us in a survey, no one has ever asked us what we need."
Part of her work is a research initiative to document the experience of young stroke survivors and to measure their satisfaction with community services within the 28 coastal counties of South Carolina. It will span the five-year period from January 2011 through May 2015 and will result in a report utilized by healthcare professionals and policy makers to further improve stroke care.
"The knowledge gap here is phenomenal," says Edmunds, who admits to being on "a soapbox" since her own stroke. "People ought to be upset by this issue. We need to talk about it… to change the way people view stroke."
For more information, visit www.youngstroke.org or call Edmunds at 843-349-2441.