Andrew and Esther Schorr When Andrew was diagnosed with CLL (chronic lymphocytic leukemia) in 1996, all I could imagine as a future was widowhood.? With two small children and hopes for a third, my grief at his diagnosis combined with deep-seated fear of being left alone literally immobilized me.? It was only through counseling—together and individually—and the addition for me of medication to calm the anxiety that has always been part of my DNA, that I was able to get a grip on what I needed to do to support Andrew, shield my young kids from the pain and sadness...

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My oldest daughter has moved away again—this time to pursue her master's degree at UCLA. ?This prompted some reminiscing that led to memories of my late husband, Larry, and our final years together before his Agent Orange-related death.  You might remember some of my story from my first Patient Power blog. Our youngest daughter is wrapping up her sophomore year at college, so I had plenty of time (and quiet) to pursue these memories.  As the sweet melancholy enveloped my thoughts, I found myself considering the role of care partner—a role that I certainly agreed to "til death do us...

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Andrew hosting a recent town meeting I have been involved in communications for patients with serious conditions since 1984 and became a patient myself, with cancer, in 1996. One thing that has really bugged me is that many people who have funded (or produced) programs for patients have assumed what works best is a watered-down version of the style of education for doctors. Heavy-duty clinical and a lot of slides and text. My wife Esther and I won national awards from medical journalists starting in the mid-'80s, because we didn’t take that approach. We have always featured real people, and...

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Greetings from Southern California as I visit family in the U.S. Along the way, I’ve spent some time on the bikes in hotel gyms and have had the chance to watch American television. And you can’t miss the flood of ads for, now, not only prescription medicines but also even for hip and knee replacement medical devices! The direct-to-consumer train from the big agencies on Madison Avenue in New York is running ever faster these days - and they tell a wonderfully slick, creative, and compelling story about the newest drugs and medical products. The goal, of course, is to...

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Ésta es la pregunta que respondieron algunos de los e-Pacientes invitados al congreso Eyeforpharma que tuvo lugar del 24 al 26 de marzo en Barcelona y que reunió a centenares de altos ejecutivos de la industria farmacéutica global. El congreso contó con unas sesiones dedicadas a los pacientes (Patient Engagement Track), en las que participaron e-Pacientes como el fundador de Patient Power y superviviente de dos cánceres Andrew Schorr (@andrewschorr) y su mujer Esther Schorr; Jack Whelan (@jackwhelan), paciente de un cáncer hematológico minoritario ((Waldenström Macroglobulinemia); Nuria Zúñiga (@tulupus), paciente de lupus, una enfermedad del sistema inmunitario; Mike Young (@elgringoinspain),...

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“If you want to challenge a process, you need to understand what the process is,” says Jan Geissler, EUPATI Director. “When patients don’t understand the process, they might delay the process by suggesting things that may not be feasible. It might frustrate people on the development side.” (Source: Nature) The European Patients' Academy on Therapeutic Innovation (EUPATI) Expert Training Course is an exciting and unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The Course will run for 15 months, at the end of which participants who have successfully completed its six modules will be awarded...

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As I write this, I am sick—pretty high fever the other night, chills, yucky cough. I should have known! Remember that nice older lady I was talking to at the apartment complex cocktail party a few days ago? Remember how she was coughing? She did her best to cover her cold, but I stood right there. Now, coughing just like she did and suffering with other symptoms, now after two trips to the pharmacy and one to the doctor, now after a chest X-ray, blood test and nose swab—I should have known! Is it impolite to step away? As a...

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Lung cancer patient Pam Griffith It hit me again the other day as I hosted a lung cancer event in Tampa, Florida. If we get sick, aren’t we lucky if medical science—just then—has something new, either approved or in a promising clinical trial, that can help us get well? Floridian Pam Griffith was dying from advanced lung cancer. Standard drugs weren’t working, and the tumors were obvious in several places in her body. With some effort, she was fortunate to enter a clinical trial for a new kind of medicine, a “checkpoint inhibitor” that allows her immune system to not be...

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My cancer diagnosis was the toughest challenge I’ve ever encountered in my life. I knew about cancer, had friends and loved ones who lost their lives to cancer, but never in a million years did I think it would happen to me. So, obviously, I wasn’t prepared. Why would I be? People don’t study cancer in preparation of receiving a diagnosis someday. None of us ever think it will happen to us, because cancer is something that happens to other people, right? Wrong! Approximately 41 percent of men and women in America will be diagnosed with cancer in their lifetime....

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Ya hace años que las asociaciones de pacientes se movilizan para tener voz en el sistema sanitario, aunque los cambios son lentos y puede decirse que aún falta algún tiempo para que estén en el centro del sistema. El inquieto Jan Geissler (@jangeissler) -en la foto- curado hoy de una leucemia mieloide crónica que le diagnosticaron en el 2001, ha entendido a lo largo de varios años de activismo por los derechos de los pacientes que es esencial que los pacientes formen parte activa del diseño de los medicamentos.  Jan Geissler, fundador de EUPATI. Con este objetivo fundó recientemente EUPATI...

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