Cynthia Burstein Waldman of Los Angeles got tired of feeling she knew more than her doctors did about her hereditary heart condition, hypertrophic cardiomyopathy; tired of worrying that a provider might accidentally give her a contraindicated drug, like nitroglycerin, in an emergency; tired of hearing conflicting information from doctors who rarely saw a woman her age with the condition. "It's not a disease most people, even cardiologists, see in their practice," she says. "They see coronary artery disease, they see older men. I was in my mid-30s, a healthy woman."
With proper medication and treatment, patients with the condition (in which the heart muscle thickens) can live a normal life. Or they can suffer heart failure and eventually need a heart transplant. Waldman's father had the hereditary condition, and she found out in her 30s that she did too.
She found a national advocacy group, the Hypertrophic Cardiomyopathy Assn. (www.4hcm.org), and through the first years of her disease depended more on the collective wisdom and experience of the association's members than on the conflicting advice of her doctors.
At a national meeting of the group in New Jersey, she met two physicians from the Mayo Clinic's Hypertrophic Cardiomyopathy Clinic. The clinic treats 300 patients with her condition each year -- perhaps 100 times more than any of her physicians saw.