Pair Seek to Make Health Care System Navigable

Pair Seek to Make Health Care System Navigable

Published on Sunday, April 26, 2009 by the San Francisco Chronicle , by Victoria Colliver

"SAN FRANCISCO - Adriana Boden was a healthy 33-year-old woman until one day in March 2007 when she felt like an explosion went off in her head.
Google employee Adriana Boden hopes to share with the general public lessons she learned about working with the health care system. (Michael Macor / The Chronicle)Although she went to her doctor immediately, it would take nearly a year of doctor visits, diagnoses of everything from migraine headaches to encephalitis, unnecessary drugs and treatments before a physician finally figured out what was wrong with her.
It was a relatively simple test - one that Boden, through her own research, suggested and was eventually ordered by a physician who listened to her - that led to her diagnosis of epilepsy. Because her symptoms weren't typical - she didn't appear outwardly to be having seizures - doctors didn't consider epilepsy. Once on the proper medication, her pain disappeared and she was able to return to work and other activities."
...Boden said there were many things she wished she had known at the onset of her illness that could have helped or shortened her search for a diagnosis and cure. "I needed to learn how to be a patient, and I needed to learn how to research and how to partner with a doctor," she said.
She formed the organization in part because most of the patient advocacy and networking groups she found were specific to certain diseases or didn't offer her the kind of help she needed. She wants the group to offer advice and resources, as well as serve as a networking tool and clearinghouse for patients.
"I want to give people confidence and help them find the courage to help themselves," she said. "One thing that happens when people get sick is they feel isolated. They often lose jobs, their income and have challenging situations with their families. They suddenly go from very independent to dependent."


M: I like what she has to say, especially the "partner with a doctor". I know that's the relationship I would like to have with my doctors.