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Becoming an empowered patient; Book co-written by local author to be featured on 'The View'
Not too long ago, if you received a life-changing medical diagnosis, you may have picked up the phone and called your Aunt Bert. You might have remembered her neighbor had a condition that sounded vaguely similar.
Or perhaps you would have searched your local library’s card catalog for books, some of which were decades old.
Nowadays, current medical information is just a few clicks away, although, not all information is created equal. While some is extremely helpful and credible, other sources can be misleading, obsolete or just plain scary.
How does someone without a medical degree wade through all of the websites and use the Internet as a tool?
To address this problem, Bainbridge Island writer Mary Thomas collaborated with medical journalist Andrew Schorr on their recently released book, “The Web-Savvy Patient.”
On May 2, their book will be featured on an episode of ABC TV’s daytime talk-show, “The View.”
In the book, Schorr shares his story of being diagnosed with chronic lymphocytic leukemia (CLL) in 1996.
At the time, the Internet was a new phenomenon, but Schorr credits it with saving his life. Through the Internet he connected with others diagnosed with CLL from across the country. The patients shared with each other their experiences and what they learned.
“Had we not sought out an online community with people who had what I was diagnosed with, I would probably be dead,” Schorr said.
Through his online support community, Schorr, who lives on Mercer Island, learned about a leading CLL doctor in Houston.
“There were knowledgeable local doctors, but they weren’t researching my condition,” he said. “So that meant I would have had standard treatment and wouldn’t have known about the changing landscape.”
Instead, Schorr and his wife, Esther, flew to Houston to meet with a specialist. Not only did the specialist provide the treatment that saved Schorr’s life, he gave the couple reassuring words to “Go ahead and have a baby.”
“That kid I just dropped off at lacrosse? He wouldn’t be here,” Schorr said. “We never would have had the confidence to have him.”
Schorr’s online interactions not only provided helpful information, it gave him a place where he didn’t feel alone with his illness. The emotional support Schorr received did wonders for his psyche.
He remembers one member telling him “Chill out. You aren’t going to die tomorrow.”
A few years ago, Schorr founded www.PatientPower.info, a website dedicated to bringing information and webcasts to patients suffering from a wide variety of illnesses.
Expert doctors are interviewed on over 200 topics. The goal is to provide specialized information from doctors and to share experiences of patients who live with chronic conditions. While largely web-based, Schorr’s program can also be heard on KOMO News Radio.
Throughout the years, Schorr and Thomas have worked together on various projects. “The Web-Savvy Patient” was a natural extension of Schorr’s website and the friends’ already established work-history.
The book is framed by Schorr’s story from diagnosis to survivorship. Other patients’ stories are used throughout the book as examples of empowered patients.
“I helped Andrew shape and weave his story through the book,” Thomas said. “The idea of writing something that actually could make a difference in someone’s health was really gratifying,” she said.
The book explains how to be an active participant on your own medical journey with your doctor.
“A core message of the book is: don’t try to be your own doctor,” Thomas said. “Doctors are trained to be doctors. Don’t try to supersede their expertise.”
Instead, chose doctors who will encourage you to be part of the team.
Schorr said that enlightened and leading doctors welcome knowledgeable patients who approach the situation in a respectful way.
If a doctor isn’t interested in working together, you need to find another doctor who is, he said.
On “The View,” Schorr will be joined by Beth Mays and her son Charlie. Their story is profiled in the book. Doctors were patronizing to Beth and brushed aside her concerns about her infant son. Through strong determination, Mays persisted until a diagnosis and treatment was found for Charlie.
Schorr will also discuss how the internet is the first stop for information when people have health concerns.
To show how quickly the Internet can produce scores of medical data, entering “Lyme Disease” into a search engine produced over four million results in 0.09 seconds.
“There are literally millions of web pages. So how do you use the information productively?” he said. “Well, that’s what the book is about.”