diabetes

PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

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The Gift of Health Data Can Help Others, and Advance Research CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit. PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need. Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of …

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Meet Christel from the PatientsLikeMe Team of Advisors

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We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence. But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences. In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition. What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges? Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously. We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance. Those who …

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World Diabetes Day: Act today to change tomorrow

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Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD). It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease. There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.  Share this post on Twitter and help spread …

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The American College of Cardiology and PatientsLikeMe to Bring Patient Focus to Diabetes Research and Care

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Real-world, clinical insights and patient engagement central to improving health outcomes  WASHINGTON and CAMBRIDGE, MASS., November 9, 2015—The American College of Cardiology (ACC) and PatientsLikeMe have launched a partnership to explore innovative ways to make real-world patient feedback and experience more central to diabetes research and care. Focused on the ACC’s Diabetes Collaborative Registry®, the partnership will encourage people living with diabetes to offer perspectives to enhance and accelerate the registry’s research and development agenda. The announcement was made during American Diabetes Month and at the start of the week marking the International Diabetes Federation’s World Diabetes Day. The Diabetes Collaborative Registry is the first global, cross-specialty clinical diabetes registry designed to track and improve the quality of diabetes and cardiometabolic care delivered to patients across the primary and specialty care continuum. The registry’s founding industry sponsor, AstraZeneca, is also a PatientsLikeMe partner and shares the goal to bring the patient voice into the center of scientific discovery and development. ACC Executive Vice President of Science, Education, Quality and Publishing William J. Oetgen, MD, MBA, FACC, FACP said the collaboration will bring PatientsLikeMe’s expertise and engagement experience to the registry. “The Diabetes Collaborative Registry is focused on transforming the quality of …

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Throwback Thursday: Diabetes and stress

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Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky, the Founder and President of the Behavioral Diabetes Institute, and the co-creator of the DDS, had to say at the time about diabetes and stress: “I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.” You might recognize Dr. Polonsky from his subsequent blog podcast and additional research with the WHYSTOP scale. You can view the results of the DDS as a PDF, but check out some of the graphs below.   Have you had an A1C test done in the past year? If you’re living with type 1 diabetes or type 2 diabetes, …

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Food for thought: August (diet) edition

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Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below: “I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.” -Fibromyalgia member on her “detox” diet “My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.” -Diabetes II member on …

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Food for Thought: July (chocolate) edition, take 2

Diabetes, Idiopathic Pulmonary Fibrosis, Patient Experiences / By

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet: “I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.” -IPF member “For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.” -Diabetes member “I will take a teaspoon or two of coconut oil (organic, extra virgin) …

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Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership

Patient Experiences / By

AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President, Global Medical Affairs and Ed Godber, PatientsLikeMe’s Executive Vice President of Life Sciences Ventures explain why. What is this partnership designed to do? Bruce Cooper: We’re focused more than ever on having patient-defined value drive our scientific developments. To do so, we need to understand more about what patients are experiencing day-to-day. Our partnership with PatientsLikeMe allows us to tap into a patient network with more than 325,000 members. Every minute of every day, they are using the website to track their condition and give others like them information and support. They’re also contributing data for research. Now, their shared experiences will become real world evidence that accelerates AstraZeneca’s R&D capability and delivers patient-centric medicines. Ed Godber: Ultimately, we want to help AstraZeneca partner with patients so that patients shape the medicines of the future, those medicines lead to better outcomes, and patients can live …

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“Focus on making small but meaningful changes” – an interview with Amy Campbell

Diabetes, Patient Experiences / By

Amy Campbell is a registered dietitian nutritionist and certified diabetes educator at Good Measures, a company that combines the expertise of dietitians with state-of-the-art technology to help people improve their eating and exercise habits. Before joining Good Measures, Amy worked for almost 20 years at Joslin Diabetes Center, an internationally recognized diabetes treatment, research and education institution. Amy, you have an impressive background – former nutritionist at Joslin Diabetes Center and co-author of 16 Myths of a Diabetic Diet, just for starters. As a certified diabetes educator, you’re aware of the media buzz around the new cholesterol guidelines. What does this mean for people with type 2 diabetes – and those at risk for it? Cholesterol guidelines have always been somewhat confusing. The Dietary Guidelines Advisory Committee, an expert panel that provides recommendations to the Department of Health and Human Services and the Department of Agriculture, has done their homework and really examined the evidence around dietary cholesterol. The good news is that, for the first time, the committee is really downplaying the role of dietary cholesterol. In other words, for most of the population, eating foods that contain cholesterol has little if any effect on blood cholesterol levels. This is great news! Whether or not eating eggs affects our …

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Are you at risk for diabetes? Take the test

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Listen up: if you’re living in the United States, there’s about a 1 in 3 chance you’ll develop diabetes over the course of your lifetime. But there are many ways you can lower your risk, which is why the American Diabetes Association (ADA) has recognized March 24 as Diabetes ALERT! Day. Today is about raising awareness for not only those living with diabetes, but those who can still make lifestyle changes to avoid developing it. Diabetes is one of the most common health conditions in the United States – in 2012, over 29 million Americans (almost 10 percent of the U.S. population) had some form of diabetes (learn about types of diabetes here).1 It’s also estimated that in 2010, 86 million citizens aged 20 or older had prediabetes, which if left untreated, is likely to develop into type 2 diabetes in less than 10 years. Check out the infographic below for a quick snapshot of diabetes in the U.S., courtesy of the ADA and CDC. Today, take the ADA’s type 2 diabetes risk test and share it with your friends, family and colleagues. It only takes a few minutes to answer the multiple-choice questions – you never know what you or …

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