18 posts from November, 2011

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.