Years ago—when my husband Andrew and I founded Schorr Communications, which became HealthTalk, which evolved to the Patient Power of today—he was not a patient in the broad sense, and I was not a "caregiver" above and beyond daily devotion to family and friends.  We knew there was a great need to support patients and their loved ones with information to help them make informed decisions about treatment options, and that was the main focus of our work in the early days. This continues to be the focal point of the content we share today.  Then Andrew became the "poster...

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This is a story about caregiving—about how the role is thrust upon you and what it means to accept it, learn it, and live it. My name is Sheryl McIntire, and I am a patient advocate and caregiver. My Story: I was in my first year of pre-medical studies when my husband, Larry, was diagnosed with congestive heart failure (CHF). At the time of his diagnosis, we still had two children at home, two daughters—one in junior high, one in high school. When you have a chronic disease, it’s not the disease that derails your life—it’s the associated co-morbidities. Every...

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En el congreso de la Sociedad Europea de Oncología (ESMO) que se celebra en Madrid estos días (#ESMO14) puedes escuchar y encontrarte con algunos de los Patient Advocates (representantes de pacientes) más conocidos, como Dave deBronkart –conocido como e-Patient Dave (@ePatientDave)-, Jan Geissler (@JanGeissler) –impulsor de la recientemente creada EUPATI (@eupatients), Academia Europea de Pacientes en Innovación Terapéutica- y también a representantes de pacientes españoles, como Alfonso Aguarón (@alfonsoaguaron) y Diego Vilallón (@diegovillalon_), éste último presidente y cofundador de la Fundación Más que Ideas (@FundacionMQI), que ha empezado a trabajar para conseguir “ un sistema sanitario innovador que beneficie a...

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Basta con echar un vistazo al hashtag #ESMO14 para hacerse una idea de la indignación de los defensores de pacientes (Patient advocates) y periodistas con el Congreso de la Sociedad Europea de Oncología Médica (ESMO). La razón: se les ha prohibido el acceso a las conferencias en las que se anuncian las últimas novedades en investigación sobre el cáncer. Pueden estar presentes en el congreso, pero no tienen acceso al conocimiento. Las críticas las dirigen a ESMO, pero la Sociedad que agrupa a los oncólogos europeos afirma no ser responsable de esta situación. Las autoridades de la comunidad autónoma y...

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By Jack Aiello I’m often asked, “If you were diagnosed 20 years ago and you are no longer getting treated, why do you still keep involved facilitating a support group or attending a myeloma seminar?” My answer? "Because I remember.” I remember being told of having cancer called multiple myeloma...and being scared about the word “cancer” of something I had never heard of.  I remember that empty feeling of having so many questions but no one to talk to. I remember being confused by the terminology...how can having too much protein be a bad thing?  I remember being overwhelmed and...

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El sábado  11 de octubre Patient Power invita a los pacientes de mieloma múltiple a participar en una jornada en el Hospital Vall d’Hebron para conocer los últimos avances en el tratamiento de la enfermedad El mieloma múltiple es un cáncer que empieza en las células de la sangre de la médula ósea. En los últimos años, la investigación ha conseguido avances importantes en su tratamiento, hecho que ofrece nuevas esperanzas a los pacientes y sus familias. Para hablar de estos avances, el Vall d’Hebron Instituto de Investigación (VHIR) y la comunidad online de pacientes de cáncer Patient Power, con...

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Daniel with his friends I wrote a blog a few weeks ago about my Seattle friend, Daniel Mulhaney, who is slowly fading away with the terrible illness ALS. As you probably have heard, the ALS Foundation had a public relations coup when they got thousands of people worldwide, including many business, government, and entertainment celebrities, to take the “Ice Bucket Challenge” and raise awareness and/or contribute money for research. Many millions were raised, more than ever before. Daniel did his own private fundraising in the Seattle area and with friends worldwide for support of "Team Daniel Lives" and a charity...

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ca Jessica and Esteban Izquierdo talking about their cancer journey The other day, Patient Power producer Tamara Lobban-Jones gave us a terrific video love story. It’s the story of newlyweds Jessica and Esteban Izquierdo and how Jessica was diagnosed with non-Hodgkin lymphoma just weeks before their wedding. Jessica and Esteban had been sweethearts for years, and this was a blow they never expected. But the power of love is a very strong anti-cancer medicine. Not always strong enough but always to the good. And so it was with Jessica and Esteban, formerly of Ecuador and now living in the U.S. As the video story...

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Una encuesta de Patient Power a cerca de 700 pacientes de cáncer de Estados Unidos muestra que la información online puede llevar a buscar segundas opiniones y a cambios en el tratamiento La encuesta realizada por Patient Power junto con la consultora Aptel Research con 697 pacientes de cáncer de Estados Unidos muestra que un número importante confían en las comunidades de pacientes online como primera fuente de información veraz y actualizada. Entre esta muestra de pacientes: -       El 86% afirma que la información de salud que encuentran en Internet les ayuda a estar al día de nuevos avances y...

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A vocal patient at a recent Patient Power event All of us want to be in control of our lives. We decide when we eat, when we sleep, and we pick our friends. When we get sick, why should we give up control? Is it because the doctor knows best? What if he or she is wrong or just behind the times? My view, for cancer patients for sure, is that we can’t afford for our doctor to be “wrong.” And apparently an increasing number of other patients agree with me, as born out by the results of our Patient...

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