10 results for month: 05/2014


Why Information is One of the Best Medicines for Cancer

From Mia Bonhomme in Belgium - Mia's website: MiaCLL It all starts with the statement “ You have cancer”. The next second you have the impression your head is too small because thoughts are fighting to take their place in the front row. You are often not able to see, hear or understand the rest of what your physician is saying. At home, you feel as if someone hit you with a sledgehammer, paralysed, not knowing what to do or how to react. In the back of your mind you still hope they've made a mistake, switched results. The moment you realise that none of this is true and the diagnosis is for real, you start worrying about your dear ones. ...

Ara article on Andrew Schorr: If You Have Cancer, Don’t Cry; Look for Information!

PatientPower.info Founder and 2 time cancer survivor, Andrew Schorr lives in Barcelona, Spain. Ara.cat just did an interview on Andrew and it is translated here for your reading. For those who are versed in Catalan, the original can be found at: http://www.ara.cat/premium/societat/cancer-digues-familia-busca-informacio_0_1140485993.html   HEALTH “If you have cancer, tell your family not to cry and look for information” The journalist Andrew Schorr has fought leukemia and is the founder of Patient Power   JOAN SERRA Barcelona | Updated on 18/05/2014 00:00 Andrew Schorr has faced cancer twice. He lives in ...

Spotlight on StupidCancer: mHealth Comes to Patient Support Groups

If you are a patient and haven’t yet researched or joined a patient support community, you should. Communities exist for chronic cancer patients, chronic disease patients, rare disease patients and patients with almost any disease you can think of. Founders of these communities are often patients themselves and started the community with the thought of helping other patients through the medical and emotional maze that comes with the territory of living with a serious illness. Websites such as Ben’s Friends or HealthUnlocked are networks of different patient communities relating to different diseases. PatientsLikeMe works more like a ...

Spotlight on CareBrigade: How a CareBrigade Can Help You

CareBrigade was created by Florence Harvey for herself, when diagnosed 10 years ago, in a new city far from family. A CareBrigade is a Patient Advocacy Posse of friends, family, neighbors, church members and acquaintances that can be lined up right after the diagnosis, even before the Patient  knows what he/she might be needing, and that be called on at any stage of the medical journey. The CareBrigade 5 Step system ©  empowers a Patient supported by at least 2 friends or family members chosen by the Patient. To get a CareBrigade started, identify the possible specific needs  (a "Wish List" of tasks),  timelines, and  the talent ...

From Caregiver to Patient Advocate: My Journey

I was in my first year of pre-medical studies when my husband, Larry, was diagnosed with Congestive Heart Failure (CHF). When you have a chronic disease, it’s not the disease that derails your life; it’s the associated comorbidities. Every day I went to classes never knowing if today we would end up in the ER...or worse. Doctor appointments were scheduled around classes, projects, and exams until we reached the point where classes, projects and exams had to be scheduled around hospitalizations. My formal education was taking a back seat to the hands on education I was receiving at the hands of my husband’s doctors. I learned to recite a pharma...

The Path to Living in the Moment

Last year, my wife, Esther, and my 20-year-old-daughter, Ruthie, took 15 days and walked along Spain’s famous “Camino de Santiago de Compostella.” This is the walk Catholic pilgrims have taken for hundreds of years from France, across Spain, and to the Atlantic coast. These days, most people who do it are not Catholic but rather walking as part of their own thoughtful journey—a break from the travails of daily life. I was envious of Esther and Ruthie’s camino (camino means “path” in Spanish). And while I met them for a day or two as they neared the end, I longed for the same kind of peace and introspection that they experienced. ...

Living Well with Cancer

I would bet that most, if not all cancer patients understand how important it is to maintain a healthy lifestyle while living with the disease. However, I feel that living well is so important for everyone that I wanted to touch on some key points and point out some cool resources that can help maintain an active and healthy life. MD Anderson points out why a healthy lifestyle is important for cancer survivors: "A healthy lifestyle is important after cancer treatment. Good nutrition and regular exercise can: Reduce your risk of cancer (new or recurrence) Help relieve long-term side effects of treatment Lessen feelings of sadness and ...

Patients Helping Patients – Improving Health Literacy and Cancer Care

ASCO recently published their paper on  State of Cancer Care in America 2014. In this paper, authors outline concerns and possible courses of action. The report addresses cancer costs, increasing treatment options, growing number of cancer survivors, disparities of care and the challenges of meeting these needs and concerns. (ASCO created a great infographic on Cancer Care in the US which you will find at the end of this post) ASCO predicts that by 2030, new cancer cases in the US will rise by 45%. By 2022, there will be almost 18 million cancer survivors, about a 35% increase from today. But ASCO is also predicting a national shortage of ...

Spotlight on Patient Power: Upcoming Event in Chicago, June 7th

Our partner, Patient Power, will be hosting Living Well with Myeloproliferative Neoplasms (MPNs), a live event at the Hughes Auditorium at Robert H Lurie Medical Research Center in Chicago on Saturday, June 7th. Here is a review of the event: A new understanding of Myeloproliferative Neoplasms (MPNs) is being shaped by developing research in the field. Experts are optimistic about new treatment options that are shaping up to improve, and potentially extend the lives of MPN patients. On Saturday, June 7 in Chicago, IL, Patient Power and its partner, the Robert H Lurie Comprehensive Cancer Center of Northwestern Universtiy, will conduct an in ...

Give Patients Knowledge and Let Them Decide! (English translation from La Vanguardia article)

Andrew Schorr, journalist, patient and founder of Patient Power I'm 63, but that's just a number: age is a feeling and I feel young. I was born in New York, the universal city, but I live in Barcelona because it's a celebration of life and I celebrate that every day. I owe my life to my wife, with whom I have three entrepreneurial children "Give patients all the knowledge and let them decide!" Joining the dots Life consists of leaving dots in the air that only make sense when we look back and see them joined up. Shorr says he did not understand why he gave up television to devote himself to providing communication between thousands of ...