Thursday, October 21, 2010

Is Diabetes More Deadly than ever?

Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old--the age of my own son.  She had Type 1 diabetes--like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent's greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted houseguest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".

I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimick Mother Nature.  We were not God and could not anticipate all of the body's needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost....

For Eilish, for Paul, and for too many others.

In the month of November, http://www.diabetesadvocacy.com/ is planning on creating a memorial to those we have lost.  We will place names and/or photos of those who fought diabetes but are no longer with us. If you know someone who has lost their battle with diabetes, please email their name and/or a picture to us at advocacy@diabetesadvocacy.com and let people know how deadly diabetes really is.
Thank you.

5 comments:

  1. Great post, Barb. I just sent you an email about the memorial site idea. Pls be in touch at amy@diabetesmine.com.

    Best,
    AmyT
    www.diabetesmine.com

    ReplyDelete
  2. Awesome post...I'm linking it to my tribute post. I've been trying to collect them.

    FYI, in my post, I do have the names of a few other children who have been taken far too soon.

    ReplyDelete
  3. Thanks for your post and for finding the words when there are none. Thank you for raising your voice.

    Best,
    Amylia
    www.diabetesdaily.com/grace

    ReplyDelete
  4. Diabetes today is a major problem in the UK and in the rest of the world; the treatment of which costs millions of pounds for which purchasing medical insurance for diabetics is a good solution.

    ReplyDelete
  5. Medical insurance can help to relieve the financial burden, unfortunatley it can be very difficult to get for people with diabetes. You often need to have insurnace BEFORE diagnosis as many plans do not conver existing conditions. Its tragic. It also means you need to make sure that you are employed by a business that has in place a "good" group plan that will cover your care.

    ReplyDelete