Powerful Patient

Powerful Patient


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Do you feel helpless in the face of "the system?" This show is to help you learn how to take control and steer your way to health. Hear how others have met these challenges and overcome them. Learn how you can do so too. This program is a forum to share your experiences, ask your questions, and learn how to create and manage your health care team. Make the healthcare system work for you!

Upcoming Broadcasts

Stephanie Sugars has been moderating an online discussion group for families deaing with Peutz-Jeghers Syndrome since 2000. Over the years she has seen lots of changes. Peutz-Jeghers Syndrome is a genetic disease. One tiny change in the STK11 gene, a tumor suppressor gene, removes one level of protection against tumor growth. With this alteration, a person is at increased risk of benign polyps and cancerous tumors of the digestive tract which may cause blockages. It may also lead to tumors of the pancreas, breast, and reproductive tract. An early sign of the disease can be discolored spots on the iips and mucous membranes. Its gastric symptoms look a great deal like those of Familial Adenomatous Polyposis (FAP), which is caused by alterations in different genes. The rate of diagnosis varies widely, and depends on the doctor remembering to think about this rare condition. However a careful diagnosis is very important, as it helps the family and the medical team now what to watch out for. Joyce and Mike speak with Stephanie about her history with Peutz-Jeghers Syndrome. For more information on Peutz-Jeghers Syndrome, see http://peutz-jeghersnews.blogspot.com/ Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group: http://listserv.acor.org/archives/pjs.html
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On-Demand Episodes

We would like to help the radiologists answer the question: "How many CT's is too many?" Mike and Joyce talk about Joyce's recent presentation to the International Conference on Radiation Protection in Medicine. We review the findings of our... more

The Powerful Patient has recently been granted full membership in the International Alliance of Patients' Organizations (IAPO), an organization of organizations worldwide, IAPO is a unique global alliance representing patients... more

Andrea Stamp is the Director of Mass IGNITE, a program of the Massachusetts Medical Device Industry Council (MassMEDIC), an organization of medical device manufacturers, suppliers and associated non-profit groups in Massachusetts and... more

Mike and Joyce speak with Casey Quinlan of Mighty Casey Media, author and blogger about patients' rights and the value of patient input in medical research. Some medical institutions are beginning to ?get? that the patients need to be... more

Mike shares from The Emperor of All Maladies on the development and progression of Lung Cancer, and talks with Joyce about Radiation exposure from Diagnostic Imaging. Be sure to read THE EMPEROR OF ALL MALADIES, a... more

In his book, The Undefeated Mind, physician Alex Lickerman argues that resilience isn't something with which only a fortunate few of us have been born, but rather something we can all take action to develop. He offers a set of... more

Mike and Joyce talk with the CEO of AliveCor, makers of an attachment for a SmartPhone that allows patients to record their own electrocardiogram (ECG) wherever they are, and provide this important data to their doctor remotely. This... more

Dave deBronkart has a well-earned reputation as an e-Patient. An internationally recognized speaker, author, and health policy advisor, he has words of strength for patients for sure. In addition, he works with physicians, hospitals, and... more

Jon-Michael Rosmann of the Iowa Prescription Drug Corporation joins Joyce to talk about their efforts to provide affortable prescription drugs to the people of Iowa. The Iowa Prescription Drug Corporation is a non-profit organization... more

Mike and Joyce speak with Gloria in Ireland. She shares her family's adventure in achieving a diagnosis of her daughter first for a brain tumor, and then for a rare syndrome, von Hippel-Lindau (VHL) which has implications for other kinds of... more
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