By Lona O’Connor
When Nancy Edelman completed her training at the Mayo Clinic as a WomenHeart volunteer two years ago, she was bursting with enthusiasm and newfound knowledge — and the desire to share it.
“In the past, no one ever paid attention to women, never considered them for testing for heart disease,” said Edelman, of Boca Raton. “It made you feel that only men had heart problems. Women have more heart disease than men, and more women die from heart disease than from cancer.”
Edelman and her neighbor, Rhoda Kitzes, head the Boca Raton chapter of WomenHeart, a support and education group for women with heart disease, whose concerns can be different from those of men.
Mended Hearts, a second Boca Raton group with a similar mission, has both women and men as members. Some women attend at both groups. And both groups are confidential, to encourage frank discussions.
WomenHeart meetings contain a healthy dose of practical concerns — diet and exercise, meditation, chair yoga and more — along with a regular visit from an expert to talk about heart disease research and news.
Edelman and Kitzes share a cardiologist, Seth Baum of Boca Raton, who emphasizes preventive care. This approach was well-suited to Edelman’s needs.
“Both my parents had cardiac problems, and [Baum] did find things that had to be addressed,” she said. Edelman had atrial fibrillation, hypertension and high cholesterol, all of which Baum got under control, she says.
“Then he told me about WomenHeart,” said Edelman. “I consider myself very fortunate. I wanted to give back now that I’m retired, and I thought this could be a perfect way. Why not help women in the same predicament? Women want to hear it from someone at their own level.”
Baum asked Kitzes to start the group at Boca Raton Regional Hospital and Baum took her to training in Washington, D.C., at WomenHeart’s headquarters. She was inspired by what she learned and the people she met.
“There were women who were waiting for hearts, one woman had a heart pump and there were a lot of younger women with different types of heart disease,” said Kitzes.
Edelman trained the following year and together with Boca Raton Regional, they put out the word about the group, which has grown to more than 20 women. They are selecting others to train to lead meetings and to do outreach work in the community. Two more are scheduled for training this year.
“We’re very excited that we’ve grown as much as we have,” said Kitzes. “The hospital has been very helpful.”
Kitzes and Edelman regularly visit cardiac rehabilitation facilities to introduce their group to women who are about to return home, often a difficult physical and emotional transition. They also meet with cardiac nurses and other medical professionals.
“I tell them it’s very important that they come to a meeting when they finish rehab,” said Kitzes. “We don’t want them to go home not knowing what to do and having no support. We can help them through the next phase.”
“People can walk out of a doctor’s office thinking they’re not going to live another week,” said Edelman. “Then they come to a meeting and they see someone and think, ‘Look how good she looks, and she has the same thing I have.’ It’s good to talk to people who are concerned about them. It puts them at ease to see so many people like themselves, and they’re in good shape.”
The benefit of working in a support group bounces back to the group’s leaders.
“It’s a good feeling to be able to help people that way,” said Edelman. “We get to meet lovely people and we concentrate on the woman as she is living with the disease.”
WomenHeart was founded in 1999 by three women who had heart attacks. Not living near each other, they formed a tiny support network, then began reaching out to other women around the country.
“At that time, misdiagnosis was a major problem for women,” said Kitzes. “They would go to the hospital with chest pain and be sent home. Three days later, they were having open heart surgery.
“We’ve worked on that, and now doctors are much more aware that thousands of women are at risk for heart disease. And we can still do more to get the word out to doctors and women and to provide peer support.”
The national WomenHeart group is active in supporting scientific research into women’s specific medical concerns as well as lobbying in Congress.
“Women are different from men in body makeup,” said Kitzes.
“They’ve got to change the way research is done, said Edelman. “Our spokespeople have done a wonderful thing, they are fighting for us.”
Kitzes was diagnosed with inflammation of the heart and lung lining as well as atrial fibrillation. She now has those conditions under control with medication and lifestyle changes.
“I manage to be as active as I can,” said Kitzes. “The WomenHeart group has been helpful. We talk about things and everybody helps each other.”
Kitzes acknowledges that a support group may not be to everyone’s taste.
“There are women who say, I really don’t want to talk about my heart disease, I just want to go on with my life, and they don’t come back to meetings. You have to want to be part of the bonding.
“We talk about everything, the obstacles we face, the depression in our lives, how to relate to your family. Very often, children or spouses get overprotective, and of course you don’t want to burden them. There are a lot of nuances in the family setup.”
Joining a support group can be just the prescription for moving on to the next stage of life, said Edelman.
“People shouldn’t live in fear,” she said. “The doctors tell you you’ll be fine but you like to hear it from a layman. You can relate to it in a more personal way.”
WomenHeart meets October through May at 1:45 p.m. on the second Thursday of each month at the Christine E. Lynn Women’s Health & Wellness Institute, 690 Meadows Road in Boca Raton.
The next meeting is scheduled for Oct. 12.
Contact Kitzes at 235-5515, Edelman at 289-8975 or Robin Mautino, program director at the Lynn Women’s Institute, at 955-5348 or email WH-BocaRaton@womenheart.org.
For virtual support groups and health education materials, visit WomenHeart: The National Coalition for Women With Heart Disease at www.womenheart.org.
Mended Hearts, a national organization of heart patients, meets from 1 to 2:30 p.m. on the third Tuesday of the month in the Drummond rehabilitation classroom at Boca Raton Regional Hospital. For information, visit www.mendedhearts.org.
For information about Mended Little Hearts, an organization for families of children with heart disease, visit www.mendedlittlehearts.org.
Lona O’Connor has a lifelong interest in health and healthy living. Send column ideas to Lona13@bellsouth.net.