One thing they don't warn you about when you finally leave the hospital with your newly diagnosed T1 child is the fact that the rest of the planet has absolutely NO idea what Type 1 Diabetes is!
You will automatically develop a "diabetes radar" - you will hear the word "diabetes" from a mile off, and you will know that, chances are, whoever has used that word is talking about Type 2! And your blood will begin to boil!
You will be able to name every single movie that has a character with T1D. One that I can remember is "Panic Room" with Jodie Foster as the parent of a T1 child. I think there's another with Harrison Ford - can't remember what that one's called but I think I'll have to watch it again just to make sure they didn't give insulin to the kid while he was having a hypo!
Oh - don't even get me started on that Aussie soapie with the T1 teenager!
More recently the Australian Government has started an advertising campaign about obesity - the "Swap It" campaign. The first one of the series of TV ads uses the word "Diabetes" when listing diseases or medical conditions that can result from obesity. Gee, thanks - how hard is it to put the words, "Type 2" in front of "Diabetes"!
Last week an American comedian walked out of an American Diabetes Association Event for kids because they were serving meat! This guy is a vegan and is apparently publicising a book he has written about his new vegan wonder-diet. After he walked out he was filmed talking to a representative from the local Children's Hospital about how terrible it was that they were serving meat at an ADA event and said, "that's like serving alcohol at an AA meeting!" On this guy's Facebook page he claimed that "Diabetes" was caused by eating too much meat. Again the T1D community banded together and made sure this guy knew the difference between Type 1 and Type 2 Diabetes - and particularly that Type 1 was NOT caused by eating too much meat!
Just this weekend a well respected Australian parenting website published an article written by a Homeopath about "Juvenile Diabetes" which lead to widespread outrage in the T1 community. The article said that "Juvenile Diabetes" was preventable and easily treatable - and essentially laid the blame for the development of Juvenile Diabetes in children squarely at the feet of lazy parents who didn't have the time to provide better food choices to their children. Wonderful!
Of course, the T1 community pulled together quickly on this one - and within a very short time the article was withdrawn. Many T1D parents contacted the author and the website, as well as the organisation the author works for and under whose name she purported to write her article!
I'm pleased to report that as of a short time prior to writing this post the Parenting Website issued a written apology to one of the parents who was instrumental in having the article removed, informed her that the author had been contacted, and promised to publish an article about Type 1 Diabetes after seeking information about this wretched disease from T1D educators and/or experts!
YAY! A WIN for the T1D community!
And I have to say that right at the moment I'm loving Grey's Anatomy - with their continued storyline about a clinical trial for islet cell transplants. I know that here in Australia we're a bit behind on Grey's episodes - but hearing main characters on a major US drama refer to T1D as a "beast of a disease" is music to the ears of a parent of a child with T1D! And - I have to say, kind of makes me wonder whether someone who works on that show has a recently diagnosed child - because as I've said before, unless you're living with this disease you just don't GET IT! The writers for Grey's appear to "GET IT!"
Just like almost every parent, before my first child was diagnosed I knew very little about T1D. I knew bits and pieces but definitely not enough to be able to look after a child with T1D. Even when my daughter was diagnosed I don't think it really hit me just how serious this was until we were being transferred to a hospital closer to home. There were no ambulances available so the hospital arranged to transfer us via cab. As we were getting ready to leave I was given a list of instructions for treating a Hypo, a bag full of biscuits and cans of lemonade (since that was all they had) and an emergency contact number in case there were any problems on the way to the other hospital in the cab! I've never been so terrified in my life! I think I checked my daughter's BGL about 10 times on that 45 minute trip!
At that time I remember thinking to myself, "Oh my goodness! If we have to be this careful just for a 45 minute car trip how on earth am I going to be able to take her anywhere or do anything? How can I drive a car at all if I have to be checking to make sure she's okay? How can I ever let her out of my sight?"
I'm a little more relaxed now, a little.
However, I am a LOT more educated - and now, when I see or hear misinformation about Type 1 Diabetes or some reference to "Diabetes" that does not differentiate between Type 1 and Type 2 I don't get quite so mad, I see it as an opportunity to educate one more person.
And you can be sure that I'll continue to educate people about Type 1 Diabetes until I draw my last breath.