Monday, November 14, 2011

World Diabetes Day and the DOC

November is Diabetes awareness month, and Nov. 14th is World Diabetes Day.  There is a lot of celebrating and complaining within the ranks about diabetes and its many and varied issues.

Its a big deal on line, but from what I can see, not so much in the real world.  Diabetes is really a hidden disease.  Not many people know very much about it.  There are several reasons for this.  Diabetes has two types.  And over 90% are Type 2s.  That means that most people who even know a diabetic personally, know a Type 2.  And, although there are similarities, the gulf between our treatments and the challenges we face is massive.   And, from my experiences, Type 1s are mostly very private about their disease.  Ironically, the times that we need the most help and attention is the same time that we feel very removed and depleted.  We just want to be left alone until we feel capable of speaking intelligently.  At that point, we prefer to walk away and get back to what we were doing when the low struck and interrupted our day.  This scene does not serve to educate the people around us.

In an attempt at a real shout out to the public, the JDRF took out a full page ad in the New York Times an attractive picture of a cute child and a chilling statistic.  The caption reads that "Piper has Type 1 diabetes.  One in twenty people like Piper will die from low blood sugar."  I have been reading about this online, and the statistic is valid.  Its awful that parents have to see this, but I can understand why the JDRF has decided to go this route.  It really is time to get this message across.  The artificial pancreas project is pushing for FDA approval and if it does all its supposed to, it should lower this number.  The strong point of the APP is that it will have the ability to turn off the pump if it detects a low blood sugar.  I'm not a big fan of the APP, but this feature would be nice.  It would allow for better sleep for diabetics and their parents.

The DOC, Diabetes Online Community has become important to me.  There exists an entire network of diabetics who have found each other online.  I found it about 5 or 6 years ago when I was learning about Symlin, the new drug I was trying out to supplement my insulin.  There were a few people blogging about their experiences with it.  It helped to encourage me to keep trying and that the nausea and horrible lows would both become manageable.  Now, I use the DOC to stay in touch with what is going on in research, in the JDRF, in advocacy, and now in diabetes alert dogs.  It is a useful tool and can be both encouraging and nurturing.  Just like any group who have one thing in common, we are a mixed bag of people. but that makes it interesting and effective.

And sadly, I would not even be aware that it is World Diabetes Day, or even month if not for the DOC.


et63 said...

EXCELLENT!! Well written Kathy.

Camille said...

As usual, well written with very good observations. Thank you, Kathy....