There is nothing like the shock and confusion felt with the words, “I’m sorry, you have cancer.” However, with those words, my journey began. Following 48 hours of exams, tests and scans, I was diagnosed with non-advanced anal cancer. According to my medical team, my physical response to chemotherapy and radiation treatment was similar to that of other patients, but the sexual health side effects realized after treatment surprised them all. I was told on two separate occasions sexual dysfunction would not be an issue. Once I was cancer-free, that was unfortunately not the case. Talking with Doctors About Sexual...

Esta semana hemos estado en el congreso Health 2.0 Europe que se ha celebrado en Barcelona. Es uno de los eventos más potentes en el sector de la salud digital y la innovación y en él han participado unos 500 profesionales. En el congreso se habló de aplicaciones móviles de salud, de Patient Empowerment y de innovaciones tecnológicas para ayudar a los pacientes. En la sesión de Patient Empowerment hablaron dos e-Pacientes de diabetes (Mike Young -@elgringoinspain, amigo de Patient Power- y Anub Zayani (@InsulAngel) y un e-Paciente doctor: el neurólogo Domingo Escudero (@EscuderoDomingo), jefe de Neurología del Hospital Trias y Pujol...

Care partnering is exhausting. It annihilates your days and trumps your sleep. Its paradoxes require the most delicate of balancing acts between negative thoughts and a positive attitude; of knowing when to establish control and when to relinquish it. It even tampers with your feelings of guilt and love. Care partnering can be isolating. My friend and colleague, Esther Schorr, has written beautifully and passionately these past two weeks, sharing a glimpse into her world as Andrew’s care partner, wife, and business partner. Many of you no doubt read between the lines that her words resonated with the life you...

This past weekend Andrew and I traveled to Niagara Falls, Canada to join more than 200 CLL patients and their care partners to learn about the latest developments in treatment from top researchers and clinicians, to find out about clinical trials, and to make connections with others like us as a means of mutual support.  Andrew moderated a patient panel where we heard about the varied experiences of diagnosis “out of the blue,” the trying time that “watch and wait” brings, the tough treatment choices and the ups and downs of getting through treatment, and the inspiring stories of how...

Olga Lamarca es la vicepresidenta de la recientemente creada Asociación Cáncer de Páncreas, que busca representar al colectivo de pacientes de esta enfermedad y trabajar para que se avance en su investigación, además de concienciar a la sociedad de la existencia de este cáncer, uno de los más desconocidos. Ella y la presidenta de la organización, Carmen Delgado, son pacientes, y decidieron crear la asociación porque "no había ninguna asociación representando a este colectivo", nos explica Olga, que fue diagnosticada hace unos dos años y actualmente está en tratamiento. Olga Lamarca. Foto: Asociación Cáncer Páncreas. Por el hecho de ser bastante minoritario,...

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...

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...

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...

At 26, they told me I had an MPN and to take a pill. So I took it. At 29, they told me I had a different MPN and to take another pill. So I took it. At 38, I listened to what they had to say. And then I researched, I questioned, I consulted, I paid attention to my labs, my symptoms, my daily ups and downs, and I researched some more before I decided with them how to manage my health. “They,” of course, are the knowledgeable MPN specialists wearing crisp white coats.   Like many MPN patients, I’ve...

Joel Blank By Carol Preston I lost the dearest of friends last month. For those of you connected with the life sciences, you may know the name Joel Blank, a Yale-educated PhD who helped develop and win FDA approval for MRI, magnetic resonance imaging. Joel also co-founded five start-up companies. But Joel’s true passion was his family: Paula, his wife of 52 years, daughters Stephanie (Jay Musoff) and Carolyn (David) Morris, and most especially his four grandchildren—Madeleine, Charlie, Gracie and Will. Joel poured his heart and soul into loving his family and creating memories. Will the rest of us do...