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Ann Bendall, Coordinator of WomenHeart, Memphis, presenting at the Society for Cardiac Angiography and Interventions meeting in Atlanta in September

Support for Women with Heart Disease

Her symptoms began one morning with numbness and tingling in her hands and feet. Slurred speech and fuzzy vision led her husband to take her to the doctor where she had an unremarkable workup. Heart disease risks were not discussed, though she had a family history of heart disease. The physician dismissed this 48- year-old mother and businesswoman as “pre-menopausal and stressed out.”

WomenHeart Resource Information www.womenheart.org WomenHeart, Memphis Support Network Contact Ann Bendall for meetings, speakers, outreach programs or patient education materials for practice offices. jabendall@comcast.net 901.754.0328

Days later she woke up one morning with stomach pain and vomiting. Her husband called the doctor and left a message with the answering service but the call was not returned. Later that evening after he had taken his daughter out to dinner, they returned only for his daughter to run upstairs and find her mother “asleep” sitting up. She put her head to her mom’s chest and cried out to her father that she was not breathing. She had died of a massive heart attack.

As painful as it is to read, this is not an isolated story. There are many others that illustrate the importance of early discovery, accurate diagnosis and treatment of heart disease in women. Awareness is the first step in making sure stories like this happen less often. And that’s precisely what a few women with heart disease set out to do.

In 1999, three women who had all suffered a heart attack while in their 40’s connected after being interviewed separately for an article about heart attacks in women. Though residing in different states, the women’s common experience bound them together as a source of support for each other. They discovered there were few resources or educational opportunities for women with heart disease in their own communities and, as women often do, they decided to use their own experiences to help others. Their action spearheaded the establishment of WomenHeart: The National Coalition for Women with Heart Disease.

WomenHeart is the nation’s only patient-centered organization that focuses exclusively on women’s heart disease and is dedicated to advancing women’s heart health through advocacy, community education and patient support. A resource for more than 42.7 million women living with or at risk of heart disease, WomenHeart empowers women to take charge of their heart health. “We are the face and voice of women at risk or living with heart disease in the U.S. and we will continue to make a difference,” said Kathy Kastan, LCSW/MAEd, a heart survivor and past president emeritus, WomenHeart, and author of From the Heart: A Women’s Guide to Living Well with Heart Disease.

Kathy’s story is one of the essays from “Stories From the Heart,” a collection of true stories compiled by WomenHeart. They are women with heart disease who suffered a cardiac event and tell their personal experiences with diagnosis, treatment and recovery. Common themes exist – a delay in seeking treatment, a misdiagnosis, or a delay in the women receiving recommended guidelines care with sometimes disastrous outcomes. WomenHeart was a lifeline for Kastan’s recovery, as it is for so many women. Some of the women in “Stories From the Heart” were not so fortunate.

According to Lisa Clough, director of communications and marketing, WomenHeart has 47,000 members with 72 support groups and 518 WomenHeart Champions in 47 states and growing. Key to the organization’s success are 518 WomenHeart Champions from 23–76 years old – “graduates” and trained community educators from the prestigious WomenHeart Science & Leadership Symposium at Mayo Clinic – a course tailored specifically to prepare them for their special mission. Instructors are physician specialists in cardiology, behavioral medicine and professionals from the top tier heart clinics in the U.S. One of the organization’s staunchest advocates, Sharonne N. Hayes, MD, is director of the Women’s Heart Clinic at Mayo and is founder and director of the symposium; she also serves on the WomenHeart board and its scientific advisory council.

Hayes sees that WomenHeart Champions receive an intensive education on the heart, complete with textbooks and resources on risk factors, heart disease, the latest in treatment modalities and research, and strategies for managing or preventing heart disease at the symposium. Once a WomenHeart Champion, they receive continuous updated resources and educational materials to help with their outreach programs. Activities include hospital visits, health fairs and speaking opportunities throughout the community as well as local and national media and awareness events. WomenHeart champions contributed 7,430 outreach hours across the U.S. in 2010.

What makes WomenHeart unique? Their visionary leadership recognized that the most powerful teaching tools for reaching other women were the personal stories each heart survivor had to tell. Each WomenHeart Champion has lived through a cardiac event that changed her life – enabling her to connect with other women with heart disease like no one else can. “In our community outreach, our survivor stories empower all women and their families to take their heart health seriously by learning their risk factors and proactively partnering with their healthcare providers to reduce their risk of developing heart disease,” stated Kastan. These role models comprise the volunteer force that has made an exceptional commitment to serve other women in their communities, and is well equipped for their mission. Their key message – heart disease is 85 percent preventable, and major risks can be decreased or eliminated with lifestyle and behavioral changes.

Physicians and other medical personnel are encouraged to refer newly diagnosed female heart patients to www.womenheart.org, especially if they are post-MI, have unstable angina or have had surgical intervention, to enable them to educate themselves and locate a local WomenHeart support network where they live.

What can physicians do? Those with a history of cardiovascular or heart disease in their family need to know their risks. Furthermore, physicians can become more familiar with differences that can exist with women’s symptoms, and follow the recommended care guidelines for cardiovascular disease regardless of gender. Tennessee, Arkansas and Mississippi rank 49th, 41st and 47th in death rates from CVD – and 50th, 49th and 52nd for stroke. The implications are staggering.

Local WomenHeart support networks offer a haven for those who have had a cardiac event or surgical intervention/procedure. WomenHeart also welcomes those interested in learning more about heart disease and prevention, or who have a loved one with heart disease. Ann Bendall, coordinator of the Memphis WomenHeart network support group added, “Our network is composed of a fantastic group of women who share a common goal. Each and every one inspires us as we support each other and make other women aware of their risks for heart disease.” Memphis WomenHeart Champion Susan Hayne’s incredible story appears in February’s Woman’s Day magazine.

Whether women need to talk to someone or require the services of a healthcare provider, the WomenHeart network coordinators (who do not give medical advice) have resources to help refer women to healthcare professionals to receive the services they need. Women who have had a heart attack or surgery can feel traumatized, overwhelmed or depressed by the entire experience surrounding the diagnosis of a serious heart condition. Often they are seeking respite and an understanding heart to relate to.

Tags:

Coordinator, Director, Emeritus, LCSW/MAEd, MD, Memphis Susan Hayne Support for women’s heart disease Women’s heart, Past President, Women’s Heart Clinic at Mayo Kathy Kastan, WomenHeart Ann Bendall, WomenHeart WomenHeart Champions WomenHeart Science & Leadership Symposium , WomenHeart Support Network

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