What heart patients want ICD makers to know

by Carolyn Thomas  @HeartSisters

dont-forget-about-me-4225379_1280 One of my Mayo Clinic heart sisters was recently invited to speak at a Patient Advocates Forum during the annual AdvaMed conference in Washington, DC – billed as “the premiere annual conference of the medical technology industry”.  This industry includes companies that manufacture cardiac devices like pacemakers and ICDs (Implantable Cardioverter Defibrillators).

So she did what all of us lucky ‘Mayo grads’ are easily able to do: she contacted other graduates of the annual WomenHeart Science and Leadership Symposium for Women With Heart Disease at Mayo Clinic. What, she asked us, would patients want her to say to these 1,000+ delegates from device companies (and the physicians who care for heart patients) attending this conference? She wanted other patient perspectives on what it’s like living with a metal device implanted inside your chest, what they worried about, and what could be done better. Here is a sampling of the responses – so listen up, titans of the medical device industry and all those who implant these devices into our bodies:   Continue reading “What heart patients want ICD makers to know”

Mayo Clinic’s ‘WomenHeart Science and Leadership Symposium’ featured in Time magazine

by Carolyn Thomas  @HeartSisters

Two organizations very dear to my heart – literally – were featured last month in Time magazine’s Women and Health series. Both the world-famous Mayo Clinic and the not-for-profit organization called WomenHeart: The National Coalition For Women With Heart Disease were singled out because of a unique and life-altering program they host for women heart disease survivors. As a 2008 graduate of the annual WomenHeart Science & Leadership Symposium at the Mayo Women’s Heart Clinic in Rochester, Minnesota, I was thrilled to see these two pioneering advocates for women’s heart health acknowledged by Time.

Each year, Mayo’s leading heart specialists welcome 50 heart disease survivors attending this 4-5-day Symposium.  I like to describe it as part world class cardiology training, and part community activism bootcamp.   Time magazine describes it like this:

“The idea is to educate women and empower them to spread their newfound knowledge about women and heart disease in their home communities. That’s the point, says the Symposium’s leader, Dr. Sharonne Hayes, director of the Mayo Women’s Heart Clinic.

“When she and three heart disease patients came up with the original idea for the Symposium back in 2002, they had one goal: to awaken patients and doctors to the impact heart disease has on the 42 million North American women currently living with it — and the families of the millions more who did not survive.   Continue reading “Mayo Clinic’s ‘WomenHeart Science and Leadership Symposium’ featured in Time magazine”