Saturday, June 20, 2015

ADA, Me and My MODY (Maybe) - Part 3

Journey to a Miracle
57 minutes + additional information

This is the final installment of my posts about what I learned about MODY at the 75th ADA Scientific Sessions.  You can read the first two installments in "ADA, Me and My MODY (Maybe) - Part 1" and "ADA, Me and My MODY (Maybe) - Part 2."  In this post I'm going to talk about the movie "Journey to a Miracle: Freedom from Insulin" that claims to be "A PBS documentary of a breathtaking cure for diabetes and the lives that were changed forever."

The movie, which is about an hour long, is a real tear jerker, mostly focused on the stories of a small group of children diagnosed with MODY (with MODY-3 in particular) who had previously been given a T1 diagnosis.  Once diagnosed with MODY-3 the children were able to start on sulfonylureas and moved off of insulin.  That is the miracle.

While my heart went out to the children and their stories I felt a bit dismayed at the message of the movie that you can just "cure" MODY by taking a little pill.  The movie portrayed insulin as a terrible life long burden with horrendous consequences.  And then suggested that taking this little pill would "cure" the patients of diabetes and that they wouldn't have any further consequences from MODY.  I'm not so sure of the validity of that message.

Friday, June 19, 2015

The Social Media Side of the ADA Scientific Sessions

[I Am] an Advocate
photo courtesy of DHF
I have to say, I was was impressed with the social media aspect of the ADA Scientific Sessions.  There apparently was a constant stream of events, I attended a few and I'll talk about them.  I also had a chance to meet some people face to face who I had never met before and that was wonderful.  And then the highlight for me was the Happy Hour event put on by the Diabetes Hands Foundation (DHF).  We got to hear my new friend and comedian Chelcie Rice and I had lots of opportunity to meet people and in particular the supporters of DHF.  And the best part was that there an auction of three paintings by Manny Hernandez's very talented wife Andreina Davila and I got to take home the painting on the left.  The vast majority of people from the Diabetes Online Community (DOC) that attended were Type 1.  There were only a few people with Type 2, but fortunately I had the opportunity to meet David Mendosa and Gretchen Becker both whose writings had an important influence on my diabetic career.

Thursday, June 18, 2015

ADA, Me and My MODY (Maybe) - Part 2

This post is a continuation of my first post on the subject "ADA, Me and My MODY (Maybe) - Part 1" where it discussed a "Meet the Expert" session on Monogenic Diabetes with Dr. Rochelle Naylor.  Today I'll discuss what I learned on Saturday of the ADA Scientific Sessions when I was fortunate to catch Prof Andrew Hattersley in a symposia on monogenic diabetes entitled "Monogenic Diabetes Matters - Getting the Diagnosis and Treatment Right."  Prof Hattersley had a very good description of GCK that it essentially shifted the entire glucose response curve to the right.   This made the fasting blood sugar higher and it meant that the glucose mediated insulin secretion happened at a higher level than in non-diabetics.  This actually made sense to me as I have observed in my own response.  My fasting blood sugar is about 40-80 mg/dl higher than normal and that although a carby meal will shoot me up over 200 mg/dl I hardly essentially never observed readings at 300 mg/dl and above.  Prof Hattersley also noted that GCK patients will feel hypo at a normal glucose.  This is also something I observe.  And it isn't about becoming "adjusted" to the blood sugar level.  My blood sugars are very consistent, but when I get my blood sugars below 100 mg/dl I start to get that hypo feeling.

Tuesday, June 16, 2015

History of Diabetes - ADA History Exhibit and Sessions

This was the 75th ADA Scientific Sessions and history played an important role.  In addition to a large display of artifacts and recordings of important diabetes history there was also a special two hour session devoted to "50 Years of Diabetes Research and Treatment."  The session was chaired by Robert Ratner who graciously lent many of the artifacts on display in the history exhibit.  The Symposium had Dr. Daniel Forte give an overview of 50 years of research, Dr. Fred Whitehouse gave a great overview of treatment and Dr. Michael Brownlee gave a perspective as a patient, physician and researcher.  Finally, Kathrym Ham gave a really personal and touching story of her 78 years with Type 1.   There were about 70 Type 1 50 year Joslin Medalists in attendance many with the supporting family.  Dr. Whitehouse specifically recognized all the medalists and noted in particular the family support.  One has to but wonder what role that support had on the long-term success of the medalists.

That sums up the symposium, but if you want to see more of the History Exhibit I encourage you to read more of this post

ADA History Exhibit

ADA, Me and My MODY (Maybe) - Part 1

I recently posted an introduction to Maturity Onset Diabetes of the Young (MODY).  This is of personal interest to me as I've had a suspicion that I might have MODY for more than five years.  This last April I was shocked to actually be referred for the genetic tests for MODY.  So being able to attend the 75th ADA Scientific Sessions and learn more about MODY and have a chance to hear the worlds experts and even ask some questions was a great opportunity.  In this post I'll be talking about my attendance at an ask the expert session on MODY by Dr. Rochelle Naylor of Kovler.  In subsequent posts I'll talk about a presentation by the infamous Professor Andrew Hattersley of Exeter as well as my viewing of the film "Journey to a Miracle" a movie about MODY.

Sunday, June 14, 2015

ADA Ruminations - Does Insulin "Innovation" Actually Help Patients?

I saw a number of new insulin options being introduced on the exhibit floor of the ADA Scientific Sessions and while they do seem like they will be useful to patients I am more concerned that they are somewhat false innovations that have been designed solely to make money.  And during a symposia session on the costs of medications for diabetes an alarming picture of the insulin industry emerged.   In this post I'll be exploring the landscape of insulin costs from the patient perspective and it isn't a pretty sight.

Saturday, June 13, 2015

When Diabetes is not Type 1 or Type 2 - Monogenic Diabetes

This is an introductory post on Monogenic Diabetes (MD), a form of diabetes that is neither Type 1 nor Type 2.  It is caused by a genetic variation (or error depending on your view) which causes abnormalities in blood sugar regulation.  MD is technically two types of genetic variations, neonatal diabetes and what is called Maturity Onset Diabetes of the Young (MODY).  All the forms of MD are inherent at birth, but MODY typically is first diagnosable in children and young adults, hence the term MODY.  In fact anyone can be diagnosed with MODY at any age and it is thought that at least 1-2% of all diabetes cases are MODY, so there might be more than 500,000 people in the US with MODY.  MODY was first identified in the 1970s and there are now at least 11 forms of MODY that have been identified.  And for many of these forms there are literally dozens of different variations that can lead to the genetic defect.

For years I've wondered whether I might have MODY.  In the following, I'm going to give more background on MODY and in future posts I'll discuss my journey leading up to being tested for MODY.  It may seem strange that I would obsess about this but the most important thing to remember is that being diagnosed with Type 2 isn't a specific diagnosis.  Type 2 is a diagnosis of exclusion and that actually means that you have "Diabetes of Unknown Causes."  And if you don't know your specific diagnosis you can mistreated, potentially severely mistreated.  And unfortunately 95% of patients with MODY are misdiagnosed as either Type 1 or Type 2. In further posts I'll tell you about actually getting the tests and eventually I'll tell you when I hear about the results (which I don't know yet).

Thursday, June 11, 2015

ADA Scientific Sessions for the Newbie

I was fortunate to be awarded a scholarship by the Diabetes Hands Foundation (DHF) to attend the 75th ADA Scientific Sessions held in Boston on June 5-9.  This scholarship was one of a series of Diabetes Advocates Conference Scholarships awarded by DHF for advocates to attend a number of conferences and meetings this year and was made possible through the generous support of Abbott Diabetes Care, BI-Lilly Alliance, Dexcom, Janssen, Novo Nordisk, and Medtronic.