8 posts tagged “American Diabetes Month”

World Diabetes Day: Act today to change tomorrow

Posted November 14th, 2015 by

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.

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

Posted November 9th, 2015 by

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 clinical care, prevention and treatment and driving improvements in quality of life and outcomes for people around the world. We want to ensure that patients and providers get the most from the registry and from access to their health data. Our partnership with PatientsLikeMe makes the patient voice central to science, and will enable us to explore ways to effectively engage patients and work with them to define potential opportunities to enhance the registry’s impact,” Oetgen said.

The collaboration’s first step calls for the ACC and PatientsLikeMe to reach out to people living with diabetes to identify priorities for the registry’s research and program development agenda. Practices participating in the Diabetes Collaborative Registry will be able to offer their patients access to the PatientsLikeMe website so they can become part of the online patient community, which is open to any patient living with diabetes. Nearly 20,000 people already use the website to connect in forums and to track and share their experiences living with diabetes, including reporting the severity of symptoms such as fatigue, pain and depressed mood, quality of life, and the effectiveness of various treatments or non-drug interventions.

As part of the collaboration, Sally Okun, Vice President of Patient Advocacy, Policy and Safety at PatientsLikeMe, will hold a position on the Diabetes Collaborative Registry Stakeholder Advisory Panel, which provides guidance and recommendations to the registry’s member governance committees. Okun said the collaboration has the potential to reach millions of patients given 1 in 3 Americans is expected to develop diabetes during their lifetime. “We’re excited to be partnering with the ACC given their deep experience with registries and unparalleled partner support. We expect that patient-generated data and data from clinical encounters will help create a vision of health for all people living with diabetes—a vision focused on improving outcomes that matter most to patients.”

PatientsLikeMe welcomes anyone living with type 1 or type 2 diabetes to join patientslikeme.com for free at www.patientslikeme.com.

About Diabetes
Nearly 30 million children and adults in the United States have diabetes, and 2 out of 3 people with diabetes die from heart attacks or stroke. Type 1 diabetes mellitus, usually diagnosed in children and young adults, can occur at any age when the pancreas does not produce insulin, a hormone needed to control the body’s blood sugar levels. It requires daily monitoring of blood glucose (sugar), insulin therapy, diet modification and exercise. Type 2 diabetes mellitus is characterized by insulin resistance or desensitization and increased blood glucose levels. It is a chronic disease that can develop gradually over time and can be linked to both environmental factors and heredity.

The Diabetes Collaborative Registry® is the first, real-world, interdisciplinary, quality improvement-driven, clinical data registry aimed at tracking and improving the quality of diabetes and cardiometabolic care across the primary and specialty care continuum. Led by the American College of Cardiology, in partnership with the American Diabetes Association, the American College of Physicians, the American Association of Clinical Endocrinologists and the Joslin Diabetes Center, the Diabetes Collaborative Registry is a big data collaboration that allows for a longitudinal study of diabetes across all stages of the disease—including presentation, progression, management and outcomes—even as patients receive treatment from multidisciplinary care teams. The mission of the Diabetes Collaborative Registry is to generate data-driven, evidence-based insights and solutions that will transform the future of personalized, high quality care and outcomes for people across the globe. The registry is sponsored by AstraZeneca and Boehringer Ingelheim Pharmaceuticals, Inc. For more information, visit TheDiabetesRegistry.org.

The American College of Cardiology is a 49,000-member medical society that serves as the professional home for the entire cardiovascular care team. The mission of the College is to transform cardiovascular care and to improve heart health. The ACC leads in the formation of health policy, clinical standards and practice guidelines. The College operates national registries to measure and improve care. It also provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more information, visit acc.org.

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Recognizing diabetes in America

Posted November 7th, 2014 by

If you’re from the United States, chances are you know someone with diabetes – according to the American Diabetes Association (ADA), nearly 30 million Americans are living with diabetes, and many of them haven’t been diagnosed yet. That’s why November is American Diabetes Month. It’s all about raising awareness for both type 1 and 2 diabetes and educating everyone about risk factors, symptoms, healthier lifestyles and more.

Diabetes affects different people in different ways. For those living with type 1, the body doesn’t make enough insulin. And for people diagnosed with type 2, the body cannot use insulin properly. Type 1 is typically diagnosed in children, teens and early adults, while type 2 can be developed at any age. Check out the CDC’s infographic on the left to get a snapshot of diabetes in the United States.1

Managing blood sugar is a part of living with diabetes, and to help foster awareness, the ADA has created a “America Gets Cooking to Stop Diabetes” campaign and designated each day of the week for a specific activity. It’s a great way to get involved – check out the factsheet here.

If you’re sharing about American Diabetes Month on social media, add the #StopDiabetes and #AmericaGetsCooking hashtags. And if you’ve been recently diagnosed, visit the type 1 and type 2 diabetes communities on PatientsLikeMe – more than 17,000 people are sharing their experiences in the forum.

 

 

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1 http://www.diabetes.org/diabetes-basics/statistics/cdc-infographic.html


Uniting for World Diabetes Day and American Diabetes Month

Posted November 14th, 2013 by

unite for diabetesDiabetes is one of the most widespread conditions in the world.1 Globally, more than 370 million people are living with diabetes, including over 25 million in the United States alone.2 And throughout November, the American Diabetes Association (ADA) will raise awareness about everything diabetes, from risk factors and genetics to proper diet and blood sugar testing. The International Diabetes Federation (IDF) has also named today, November 14th, World Diabetes Day, and now is the time to start sharing your experiences with both type 1 and type 2 diabetes.

Diabetes mellitus sometimes gets lumped into a singular condition, but as you probably know, there are actually two very different kinds of diabetes, labeled type 1 and 2 (There is a third type, known as gestational diabetes that can sometimes occur during pregnancy but is not necessarily permanent). Type 2 is by far the most common, and the IDF’s website has a great infographic explaining the basics.

stop diabetes

So what’s going on this month? Both the ADA and the IDF are coordinating a ton of ways to promote diabetes awareness during November, and if you’re unsure where to begin, here are a few ideas to check out:

 

 

What’s going on at PatientsLikeMe for diabetes?

 

Just recently, nearly 600 diabetes members filled out the 17-item Diabetes Distress Scale (DDS), which measures the amount and types of problems diabetes can cause in a person’s life. Check out the complete results here.

The community also just participated in one of our very first Open Research Exchange (ORE) questionnaires. In fact, more that 700 diabetes members added their voice to it. PatientsLikeMe’s pilot research partner Dr. William Polonsky is developing the WHY STOP scale on ORE, which will help us all understand if we’re eating a meal, how do we decide we’re done. Stay tuned for more info and the complete results!

Finally, check out our interview with Dr. Richard A. Jackson, who shared some of his thoughts with us last June. He’s currently an Assistant Professor of Medicine at Harvard Medical School and also the former Director of the Hood Center for the Prevention of Childhood Diabetes at The Joslin Diabetes Center. Richard has been studying diabetes for over 30 years – he even led the first National Institutes of Health clinical trial to study diabetes prevention.

There are over 13,000 PatientsLikeMe members currently living with diabetes, and many of them have been sharing their experiences and contributing to real-world research that could benefit their fellow diabetes patients. If you’re living with type 1 or type 2 diabetes, you can find others just like you on PatientsLikeMe. Track your own experience with a personal health profile, or share your story in the community forums to start living better together, during American Diabetes Month and all year long.


1 http://www.cdc.gov/features/dsdiabetestrends/

2 http://www.idf.org/worlddiabetesday/toolkit/gp/facts-figures


Building a True Picture of Diabetes During American Diabetes Month

Posted November 5th, 2012 by

Get a Clearer Picture of Diabetes During American Diabetes Month This November

November is American Diabetes Month, and this year, the American Diabetes Association is working to reshape the understanding of diabetes.  The goal is to raise awareness of the fact that diabetes is life-changing disease with a huge societal impact – and not a minor hindrance, as some people think.

As part of this mission, the ADA is asking patients with type 1 diabetes and type 2 diabetes to send in a photo that captures what life with diabetes is like.  What are the everyday challenges and considerations?  Help the ADA build a mosaic of the “true picture of diabetes” and CVS will donate a $1 for every photo uploaded, up to $25,000.

Upload Your Photo of Life with Diabetes, and CVS Will Donate $1 for Each Photo.

Another way to get a clearer picture is to consider some of the alarming facts about diabetes, which is projected to affect as many as one in three Americans by 2050:

  • 26 million Americans are currently living with the disease
  • 79 million Americans have prediabetes, putting them at risk for type 2 diabetes
  • Two out of three people with diabetes die from heart attack or stroke
  • Diabetes is the leading cause of kidney failure and new cases of adult blindness
  • The cost of diabetes is $1 out of every $5 in total healthcare costs

If you are living with diabetes, or you’re at risk for developing it, connect with others like you at PatientsLikeMe.  There are more than 1,000 type 1 diabetes patients and more than 4,700 patients type 2 diabetes patients in our community who are sharing experiences with blood glucose controlsymptoms, treatments and more.

How do they evaluate common medications such as Metformin and Insulin Glargine?  How many have undergone a kidney transplant?  Who’s taking part in a diabetes-related clinical trial?  Exchange knowledge and support with those facing many of the same struggles as you.

A Snapshot of the Type 2 Diabetes Community at PatientsLikeMe

For an in-depth picture of a family affected by diabetes, check out our interview with kidney transplant recipient Michael Burke.


Remembering My Sister Linda: An Interview with Diabetes Patient Michael Burke (Part I)

Posted November 2nd, 2011 by

PatientsLikeMe Member and Diabetes Blogger Michael Burke

As we’ve discussed in recent blog posts, November is American Diabetes Month.  To help you learn about diabetes from a patient’s point of view, we interviewed Michael Burke, a PatientsLikeMe member who writes “Life on the T List”, a blog about his life as a diabetic before and after a kidney transplant.

But as you’ll soon see, Michael’s life as a diabetic was first influenced by that of another diabetic – his older sister Linda. (He himself was not diagnosed until he was a teenager, more than 10 years after Linda’s diagnosis.)  Below is Michael’s chronicle of her lifelong struggle with type 1 diabetes, and next week we’ll share his own journey, including his June 2011 kidney transplant. Don’t miss this moving story of a family profoundly affected by diabetes.

Tell us about your older sister Linda.

Where do I begin?  Linda was someone who I looked up to my whole life when we were growing up, and even though she is no longer here, I still look up to her.  Linda was diagnosed with [type 1] diabetes when she was six years old, which made me three when she was diagnosed.  So, to say that I grew up with diabetes my whole life is not a stretch.

I didn’t realize it early on, but for Linda, and many diabetics during that time [the 1970s-1980s], staying in control of diabetes was very difficult.  Daily testing was very rudimentary compared to testing today.  Testing back then relied mostly on urine dip sticks and trying to determine what color the test strip was and then compared that to color chart on the bottle.  When the glucose meter was finally introduced, it was as if you could hear a collective sigh of relief from all diabetics.

Linda struggled with her diabetes through much of her childhood and into high school, and then when she was finally in college, it was really taking a toll on her.  Ever since being a child, Linda had a dream of becoming a nurse, perhaps because of the care she received from nurses growing up when she was at the doctor’s office or in the hospital.

If there was one thing that I have always taken from Linda, it is her determination.  She never once wanted to let diabetes control who she was.  While in nursing school at Simmons College in Boston, Linda began to lose her eyesight due to diabetes, among experiencing other complications such as the onset of kidney disease.  But she was not about to let this stand in her way of becoming a nurse.  In fact, [my brother] Tommy and I would go through her nursing books with her and help her study when she was having difficulty seeing the pages.

Michael Burke's Sister Linda on the Day She Graduated from Nursing School

A friend of our family who worked in the ophthalmologic division of Johnson & Johnson at the time told my parents of a retina specialist in Boston that may be able to help Linda.  The doctor was Dr. Edward Ryan.  Dr. Ryan and Linda had a great doctor/patient relationship.  He took a special interest in Linda’s case.  He began using laser surgery on Linda.  All I remember from those treatments was Linda screaming in pain.  The procedure has changed some since then, because I have had it done and it was not painful, probably due to the anesthetic.  Needless to say, Linda and the rest of our family credited Dr. Ryan with saving Linda’s sight – to the point that she was able to graduate nursing school and become a nurse at Children’s Hospital in Boston.

One of the areas many people don’t realize that diabetes affects is your heart.  In 1989, at the age of 24, Linda’s body couldn’t take the constant pounding diabetes was giving her, and, on March 14th, she passed away from underlying heart disease brought on by diabetes.

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Be on the lookout for Part II of Michael’s interview next week.


American Diabetes Month Kicks Off with “T1 Day”

Posted November 1st, 2011 by

As we mentioned in our blog about the “Calling All Types” campaign last week, November is American Diabetes Month.  Today, November 1st, is also “T1 Day,” a new event sponsored by the Juvenile Diabetes Research Foundation (JDRF) to raise awareness about type 1 diabetes (previously known as juvenile diabetes), which is often diagnosed in children, teenagers and young adults but may occur at any age.

November 1st is "T1 Day," An Event Designed to Raise Awareness of Type 1 Diabetes

Affecting 5% of those with diabetes, type 1 diabetes occurs when the pancreas does not produce any insulin, a hormone that is needed to convert sugar, starches and other food into energy for the body.  As a result, people with type 1 diabetes are “insulin dependent,” meaning they must take insulin in order to stay alive.  This requires testing their blood sugar and taking insulin (via injection or an insulin pump) multiple times per day for the rest of their lives.

In contrast, type 2 diabetes patients do produce insulin.  The problem is that it’s either in insufficient amounts, or the body doesn’t respond to it as it should.  Thus, oral medications, supplemental insulin and/or lifestyle modifications such as diet and exercise may be prescribed to help control blood sugar levels and prevent hyperglycemia (high blood sugar), which is a major cause of serious diabetes complications such as blindness, kidney failure and amputations.

Learn More About How You Can Get Involved with American Diabetes Month

Here at PatientsLikeMe, there are currently 386 patients reporting type 1 diabetes, with 63% female and 37% male.  Some of the most commonly reported symptoms include blurry vision, urinary frequency and excessive thirst, while some of the most commonly reported treatments are Insulin Glargine, Insulin Lispro and Insulin Aspart.  Collectively, our members have submitted 45 evaluations of these three insulin types, sharing their experiences with dosage, side effects, cost, adherence and more.

Confusion about the differences between type 1 and type 2 diabetes – the latter being far more prevalent as well as strongly linked with the obesity epidemic – is a frustration for some of our type 1 members.  As one member writes in our forum:

“As a type 1 diabetic, I am sick of people giving me advice or ‘cures’ that are for type 2.  Almost all advertising in Canada is directed towards type 2 diabetics and how the disease is on the increase due to poor eating habits and obesity, weight problems, whatever.  So when people hear I am a diabetic, I get: ‘Should you really be eating that dear, diabetics should not eat sugar.’  I look at them and think of the blood test I just did, which let me know that I needed some sugar.”

Indeed, as the JDRF states on its Myths and Misconceptions page, “While obesity has been identified as one of the ‘triggers’ for type 2 diabetes, it has no relation to the cause of type 1 diabetes.  Scientists do not yet know exactly what causes type 1 diabetes, but they believe that both genetic and environmental factors are involved.  Eating too much sugar is not a factor.”  Also, as the patient quote above illustrates, patients with type 1 diabetes must always be on alert for insulin-induced hypoglycemia (low blood sugar), which requires an immediate intake of sugar to avoid fainting and other complications.

For a deeper glimpse into life with type 1 diabetes – which is diagnosed in more than 15,000 children and 15,000 adults each year in the US – tune in to our podcast interview with Sarah Taylor, a registered nurse and friend of the company who was diagnosed with type 1 diabetes at the age of nine.

To learn about other American Diabetes Month events, check out this great preview on the blog Diabetes Mine.  And if you’re a diabetes patient, don’t forget to share your thoughts and stories at CallingAllTypes.com.


Announcing the “Calling All Types” Campaign for Diabetes Awareness

Posted October 27th, 2011 by

In June, we told you about our new partnership with BBK Worldwide, a pioneer in healthcare communications. Now, we’re excited to report that our first outreach project together is kicking off.

Visit CallingAllTypes.com, a Place for People with Type 1 and Type 2 Diabetes to Share Their Stories

In preparation for American Diabetes Month in November, PatientsLikeMe and BBK Worldwide announced today the launch of a new online diabetes health movement entitled “Calling All Types.” This innovative social health initiative encourages people with type 1 and type 2 diabetes to share their real-world experiences and help raise awareness of the disease, which affects 25.8 million children and adults in the US (or 8.3% of the population).

Are you a diabetes patient? Share your thoughts and stories at CallingAllTypes.com. Within seconds, social media outlets including Twitter, Facebook and YouTube will pick up and share your words across the Internet. The goal is to create instantaneous viral awareness that will inform the public, including policy makers and health professionals, about the real toll diabetes takes on individuals and families.  (Check out the video below to learn more.)

In addition to rallying supporters at CallingAllTypes.com, the campaign is focusing much of its initial awareness-raising efforts in Atlanta, Georgia, where diabetes prevalence exceeds the national average by a full percentage point. “We are incorporating a “take a community by storm’ approach,” says Bonnie A. Brescia, founding principal of BBK. For each of the first 10,000 visitors to post a comment at CallingAllTypes.com during November, the campaign will donate $1 to the Atlanta chapter of the American Diabetes Association.

So if you’ve got something to say about diabetes, the fastest-growing chronic disease in US history, don’t hold back. Spread the word today at CallingAllTypes.com. Then, if you haven’t already, join the diabetes patients at PatientsLikeMe who are coming together to share experiences, find others like them and take control of their health.