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Native women spread heart disease awareness

MENIFEE, Calif. - Minority women know less about heart disease than nonminority women, according to a study by the American Heart Association published in the January issue of Journal of Women's Health. A survey of 1,000 women revealed that less than 32 percent of minority women are aware of the dangers of heart disease, while 68 percent of Caucasian women are well aware of the dangers.

WomenHeart, an organization launched in 2000, may be the key to improving those statistics, and even Indian country has a voice.

Wanda Cook, Onondaga/Seneca and vice president of WomenHeart's Board of Directors, spreads awareness to Native women about the dangers of heart disease via conferences and various speaking engagements.

For more than two decades, Cook has struggled with diabetes and lupus. Her bout with heart disease began in 2002 when she awoke one night sweating and gasping for air. When she went to her doctor the next day, she was told that she most likely suffered three mild heart attacks.

Cook discovered WomenHeart while searching for a support group and information, and was impressed by the easy access to educational materials.

The same year she was diagnosed with heart disease, she was invited to attend WomenHeart's annual symposium at the Mayo Clinic in Rochester, Minn. While at the conference, she met five other Native women, which helped her feel at ease.

''This is an avenue to get the best medical prevention and information in the country,'' she said.

Cook said she was amazed by all of the technological advances she learned about at the symposium. Yet, she explained, this sort of technology fails to reach most women living on reservations. ''There is so much more that can be done in our communities,'' she said.

Passionate, outspoken and caring best describes the Menifee resident. She said heart disease now leads as the No. 1 killer of women.

''I don't know much about the paperwork trail, but I know how to talk to women,'' she said. ''I think heart disease has taught me patience, how to calm down and how to respect my body.''

On Feb. 3 she spearheaded the 2nd Annual Native American Health Fair and Luncheon at Pechanga Resort and Casino. She invited Native doctors and women with heart disease to contribute their experience and expertise. The daylong event featured

lectures, workshops and exhibit booths.

''When I go to talk to people in Indian country about heart disease, I give it to them straight from the hip. I don't cut corners,'' she said.

And there are other women in Indian country who parallel Cook in their passion to spread the word about heart disease.

Renee Roybal's heart problems began at 40. Prior to her first heart attack, she exercised, ate properly and had no family history of heart disease. Doctors told her that a viral infection had attacked her heart, which began a series of traumatic events that would lead up to a heart transplant in 2002.

Roybal, San Ildefonso Pueblo from Santa Fe, N.M., now 47, was invited to the annual symposium last year, which helped to fuel her passion and spread the word to women in her community.

''I thought that I was the only one and I felt so alone,'' she said. ''It has been a healing experience sharing my story.''

Prior to joining WomenHeart, her family and friends created the Renee Roybal Heart Fund to help pay for medication and ongoing medical costs. This year was the 4th Annual Heart and Soul Run, All-Terrain Running Race 5K and 1-Mile Fitness Walk.

Next year, she plans to hold a WomenHeart's mini-conference the same weekend as the run.

Heart disease strikes even younger women. Brandie Taylor, 33, has a heart defibrillator and pacemaker. She went into heart failure while she was pregnant with her second child and has endured three surgeries to adjust the defibrillator. Doctors gave up trying to fix the pacemaker.

Taylor said she was diagnosed with a small mitral valve leak in her heart about eight years ago, and she also has a family history of heart disease.

When she complained to her doctor about constant coughing, fatigue and difficulty sleeping, he dismissed the symptoms as asthma. Another told her it was pregnancy-related problems. Not satisfied, she went to the cardiologist who diagnosed the mitral valve leak and immediately sent her to the hospital.

''My heart was working at 10 percent,'' she said. ''I had the classic symptoms of someone with heart failure. They just don't think women have heart problems.''

Taylor attended the symposium last year and upon returning, she has shared her experience with various groups and plans on continuing to spread heart disease awareness to local Indian communities. Her heart now functions at 25 percent.

Taylor said she was recently re-elected as vice chair of her tribe's council, the Santa Ysabel Band of Diegueno Mission Indians. Despite some tribal members' concern about her health, she was elected by an overwhelming number of votes.

''This is as good as I am going to feel, and I thought that this is the best time for me to do as much as I can for our tribe,'' she said.

As for Cook's future, her term as vice president expires in May. She plans on staying involved with WomenHeart by starting a few campaigns geared toward Native women.

She hinted that a ''red shawl campaign'' would help spread heart disease awareness to Native women via magazines and newspapers. Photos would feature Native women and girls, who have undergone heart surgery, covered by a red shawl with a small opening to reveal their scars.

For more information, contact WomenHeart at (202) 728-7199 or