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.

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 control, symptoms, 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.

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

“Before me, there were hundreds and thousands of other people with Parkinson’s who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.” – Parkinson’s patient Jean

Last year, PatientsLikeMe unveiled our Clinical Trials search tool, which helps you find upcoming studies that might be right for you.  We also introduced a matching feature that notifies you on your profile when you meet the criteria for a new study.  That means when your condition, gender, age and location are all a match.

But if you’re unfamiliar with the clinical trial process, the idea of participating in a study may be a bit daunting.  That’s why the National Institutes of Health (NIH) recently launched a new microsite called NIH Clinical Research Trials and You.  Here you’ll find a clear overview of how clinical trials work as well as a number of personal stories from both study volunteers as well as researchers.

Below are two volunteers’ stories to give you a sense of the different reasons people have for participating in research.

Jenny (Type 1 Diabetes)

Jean (Parkinson’s Disease)

Have you participated in a clinical trial?  Share your experiences in the comments section.

Today is World Diabetes Day, sponsored by the International Diabetes Federation.  An official United Nations Day since 2007, World Diabetes Day is held every year on November 14th to commemorate the birthday of Frederick Banning.  Along with Charles Best, Banning is credited with the life-saving discovery of insulin in 1922.

Why is there a need for a global diabetes day?  As the United Nations wrote in their 2007 resolution, diabetes is “a chronic, debilitating and costly disease associated with major complications that pose severe risks for families, countries and the entire world.”  Namely, it is the cause of four million deaths worldwide every year, with someone dying every eight seconds from the disease.

The global symbol for diabetes awareness is a blue circle, and supporters everywhere are encouraged to wear blue today to help spread the word about this pandemic.  You can also help get the message out about prevention.  While type 1 diabetes cannot be prevented, research shows that, in many cases, type 2 diabetes can be prevented by maintaining a healthy weight and being physically active.  Regular walking for at least 30 minutes per day, for example, has been shown to reduce the risk of type 2 diabetes by 35-40%.

We recently highlighted type 1 diabetes (and how it differs from type 2) in our blog post, “American Diabetes Month Kicks Off with T1 Day,” as well as our two-part interview with type 1 patient Michael Burke.  Here’s a little more information about type 2 diabetes, which accounts for at least 90% of all diabetes cases worldwide.  At PatientsLikeMe, 1,773 patients report type 2 diabetes, with 68% of them female and 32% male.  One of the most commonly reported treatments is Metformin, an oral anti-diabetic medication prescribed when hyperglycemia (high blood sugar) due to diabetes cannot be controlled through exercise and diet alone.  What do patients say about this drug?  Check out the 125 treatment evaluations submitted by our members, who share their experiences with dosage, side effects, efficacy, cost and more.

With a staggering 366 million people diagnosed with diabetes worldwide – and another 300 million at risk – it’s imperative that diabetes awareness and knowledge grow faster than the disease itself.  The new “Calling All Types” diabetes awareness campaign – an initiative of PatientsLikeMe and our partner BBK Worldwide – helped mark World Diabetes Day this past weekend at the Diabetes University 2011 event in Atlanta, Georgia.  Now in its 18th year, this event works to educate both medical professionals and the public.  Given that the prevalence of diabetes in Atlanta is a full point higher than the national average, Calling All Types has made Atlanta the focal point of the campaign’s initial awareness-raising activities.

Are you a type 1 or type 2 diabetes patient?  Share your story at CallingAllTypes.com in honor of World Diabetes Day.  For everyone else, “act now” by wearing blue, talking about type 2 diabetes prevention or simply taking a walk around your neighborhood.

Last week, in Part I of this interview, PatientsLikeMe member and blogger Michael Burke shared his sister Linda’s struggle with type 1 diabetes.  Today, we learn about his own type 1 diabetes journey, including his June 2011 kidney transplant as a result of diabetes-induced kidney failure.

1.  What diabetes complications have you faced?

Diabetes is a disease that appears to be misunderstood by most people, in that the consequences of the disease can lead to many different complications.  As I mentioned earlier, both Linda and I suffered from diabetic retinopathy…essentially, you can go blind from diabetes.  Another complication is nephropathy, or kidney disease.  For me, this led to kidney failure and the eventual need for a kidney transplant this past June.

Heart disease is another major complication.  Personally, I never knew that I had any heart disease until one day my primary care physician sent me for a routine stress test.  During the stress test, the cardiologist felt it necessary to immediately admit me to the hospital and do a cardiac catheterization the next morning.  When he did, he found two blockages in my right coronary artery – one was a 90% blockage and the other was an 85% blockage.  I then had several stents placed.  After two years, those stents were becoming ineffective, and I required heart bypass surgery.  Lucky for me, there was a heart surgeon in Boston who was doing bypass surgery robotically.  What this meant for me was a much smaller incision (about an inch and a half compared to the whole chest being opened up), and being a diabetic, less risk of infection and a shorter recovery time.

Another complication is [diabetic] neuropathy, or nerve damage.  Typically, this usually affects the feet, but other parts of the body can be affected as well.  As for Linda and I, the neuropathy is/was primarily in our feet.  For Linda, it was extremely painful, with the feeling that you are constantly being poked in your feet with something very sharp.  For me, the feeling has been quite different, in that there is no feeling, at least around my big toes, which in turn has caused some balance issues for me.  Neuropathy is serious, it’s not just that it is painful for some and a loss of feeling for others.  It can also lead to amputation of your toes, your foot, or in drastic circumstances, part of or all of your leg.

2.  What was your kidney transplant experience like, and how are you doing now?

I went through a whole lot of emotions over the course of getting this new lease on life.  Although I had been prepared by my kidney doctor over the last several years that I was most likely going to need a kidney transplant, the day I sat with the transplant team for the first time was absolutely frightening and surreal at the same time.  It’s hard to explain.

I just remember sitting with the transplant team and when the transplant doctor said, “Ok, we will put you on the transplant list within the next few days, and we will move forward,” my heart was pounding so hard I thought it was going pop out of my chest.  There is also a lot of anxiety that goes along with the whole transplant process.  At first, I didn’t know where the kidney would come from.  I knew there were family members who said that they wanted to be tested and now I was also on the national transplant list.

When my brother Tommy was starting the testing process, I kept going back and forth in my head.  It would be great to have someone close to me donate, but then there was the guilt.  If I ever rejected their kidney now they are left with just one.  As it turned out, Tommy was a 5 out of 6 antigen match, and he donated his kidney to me in June.

I had often heard before the transplant that you won’t understand how badly you felt or how sick you were before the surgery until after the surgery.  That could not be a truer statement.  I never really felt sick before, and I have been told that is because kidney disease can be very slow and progressive.  However, looking back today, I can honestly say that there has been a 180 degree turnaround.  I have much more energy and I just generally feel well – it has been a huge difference, and I have Tommy to thank for that.

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Are you a diabetes patient as well?  In honor of American Diabetes Month, share your thoughts and stories at CallingAllTypes.com.

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.

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.

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.

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.

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.

Welcome to the third installment of our new weekly podcast series called “It’s Friday – Let’s Journal Club.”

This week’s guest interview is with Sarah Taylor, a type 1 diabetes patient, registered nurse (RN) and friend of the company. Sarah stopped by PatientsLikeMe headquarters last Friday to talk about being diagnosed with type 1 diabetes at age nine and how PatientsLikeMe has become a part of her life today.

After this engaging “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Sarah to learn more about how type 1 diabetes affects her day-to-day decisions – from eating to exercising – and how as a nurse she envisions shared patient data helping medical providers. Listen in below to hear what that might look like and also what advice she has for those who are newly diagnosed with type 1 diabetes.