The Origin of the Juvenile Diabetes Research Foundation.

I can tell you exactly where I was when I first saw the JDRF logo.

It was about 5:30pm on Thursday 8 April 2010 and I was in the paediatric emergency department at Sydney Children's Hospital with Issie, who was 9 years old and very very sick.

The JDRF logo was on a blue and black backpack handed to Issie by a young endocrinology registrar who was just finishing a 28 hour shift at the hospital - she stayed a little while longer when she heard that there was "another" new diagnosis (Issie) on the way by ambulance. An 8 year old little girl was diagnosed earlier that day.

Issie's diagnosis is a different story for a different day.

For this post I have decided to look at the history of the Juvenile Diabetes Research Foundation, an organisation that has become an enormous part of our lives since the Easter school holidays last year.

The natural starting point of this post is a video about the Founding of the Juvenile Diabetes Foundation ("Research" was added later) by the Lee Ducat, a T1D Mum - just like you and me!

The Juvenile Diabetes Foundation began it's life at a cocktail party on the evening of 21 May 1970.



According to an article on the JDRF.org website, "The Founding of JDRF" it was decided that the foundation would be run by volunteer lay people.

In the first decade of it's life, research funded by the JDRF led to the discovery of hormones which alter the effect of insulin - including glucagon, which is now an essential item in every Type 1 Diabetic's arsenal of medical supplies!

The 1970's also saw the discovery of methods of treating the progression of diabetic eye disease as well as
the first test for measuring long-term blood glucose levels (the HbA1c test).

During the 1980's the JDRF funded research which led to the development of genetically engineered insulin, and experimentation with a pre-programmed insulin delivery system - the early forerunner of the insulin pumps we now have available!

Important discoveries were also made with respect to the effects of blood sugar on brain function and foetal development.

In the 1990's research funded by the JDRF headed down the path of Islet Cell Transplantation, and saw advancements in pancreatic transplants and their success rates.

Progress continued to be made in the fields of diabetic retinopathy and cardiovascular disease.

This was also the decade that the JDRF established the Human Islet Distribution Program.

With the new millennium came many new advances in fields of Islet Cell Transplants, non-invasive glucose monitoring, intervention into the early progression of diabetic eye disease, clinical trials aimed at the preservation of functioning insulin-producing cells in order to slow or stop the progression of type 1 Diabetes in its early stages.

Better methods of monitoring, insulin delivery and tools for treatment and management of type 1 diabetes have been a major aspect of JDRF funded research since the year 2000 - with substantial focus placed upon the Artificial Pancreas.

These areas of research and development are only a small sample of the JDRF's enormous impact upon the lives of children and adults with Type 1 Diabetes around the world.

And to think, this all began with a few parents of Type 1 Diabetic kids sitting around a kitchen table talking about what they could do to make their kids' lives just a little easier.

Now, in the second decade of the new millennium, the same thing is happening - although the kitchen table has become online social networking groups.

Although we don't have a CURE, yet, if the JDRF has given us ONE THING - it is proof that we parents CAN make a difference!

Our Christmas Wish...

I've kinda been "missing in action" from this blog for the last few days - but I promise, I have a good excuse!

I have been working on a project for the Parents of Aussie Kids with Type 1 Diabetes Support Network which I would like to share with you.

One thing all T1D parents know is that our kids are kids first - and just like every other kid, they wish for regular kid stuff at Christmas time.

However, we also know that under the surface, and in the hearts of every child with T1D and every parent of a child with T1D is the same wish...

The wish for a CURE for Type 1 Diabetes.

Please enjoy (and share) this video, which features some of the incredible children of the Parents of Aussie Kids with Type 1 Diabetes Support Network.

Parents of Aussie Kids with Type 1 Diabetes Support Network - Christmas Card Fundraiser 2011

If you are having problems submitting this Form please email your order details to:

2kids2pets2pumps@gmail.com

Thanks!

When bullying threatens lives...

Today I want to talk about a very very serious issue - bullying.

Now, we all know that bullying goes on in schools and, unfortunately, in some instances, can even occur in the workplace.

Bullying is always harmful, but what happens when the victim of bullying has a medical condition? What happens when the actions of others who are completely ignorant about a particular medication or medical condition could result in loss of life?

Yesterday I learned of a case of workplace bullying involving a young man with Type 1 Diabetes that left many members of the T1D community speechless.

This young man arrived at a new job, in a relatively remote area, and during the course of the day some other employees decided it would be funny to destroy his insulin supplies! He was left only with the insulin pen he had on his person at the time, which would not have lasted very long.

Several months ago I also learned of a teenage T1D boy who had been bullied repeatedly in the school environment, however this was taken to another level when a fellow student cut the tubing from his insulin pump!

This is not just bullying, this is criminal negligence.

Below are a number of passages taken from R v Pacino: Extending the Limits of Criminal Negligence? - under the heading "Definitions" of an article written by Law Student, Ian Macfarlane which appears in Volume 5, No. 1 (March 1998) of the Murdoch University Electronic Journal of Law:

3. At common law criminal negligence is not to be confused with negligence at tort. Criminal negligence requires a greater standard of proof on those who wish to prove it (i.e. the Crown), as is indicated by Hewart LCJ in R v Bateman:[6]  

In explaining to juries the test which they should apply to determine whether the negligence, in the particular case, amounted or did not amount to a crime, judges have used many epithets, such as "culpable," "criminal," "gross," "wicked," "clear," "complete." But, whatever epithet be used and whether an epithet be used or not, in order to establish criminal liability the facts must be such that, in the opinion of the jury, the negligence of the accused went beyond a mere matter of compensation between subjects and showed such disregard for the life and safety of others as to amount to a crime against the State and conduct deserving punishment.[7] 

4. This test for criminal negligence was followed in Andrews v DPP[8] by the House of Lords. In Australia the test was followed by the Queensland Court of Criminal Appeal in R v Scarth[9] and by the High Court inR v Callaghan[10] and Evgeniou v R.[11]

5. Negligence at tort, on the other hand, looks at the defendant's conduct in comparison to a standard of reasonable care.[12] In Blyth v Birmingham Waterworks Co[13] Alderson B defined the standard as: 

[T]he omission to do something which the reasonable man, guided upon those considerations which ordinarily regulate the conduct of human affairs, would do, or do something which a prudent and reasonable man would not.[14]

I have highlighted in bold type the statements that stood out to me in these passages that could directly relate to the instances of bullying referred to above.

This type of behaviour is NOT acceptable.

Destroying life-sustaining medical supplies or the means of the delivery of life-sustaining medication clearly demonstrates "disregard of the life and safety of others" and is not something that a "prudent and reasonable man" would do.

The question one must ask is, if these people were aware of the potential for loss of life in these circumstances would they have acted in this way.

We can only hope that the answer to that would be a resounding "No."

Therefore, we have yet another reason to raise awareness about Type 1 Diabetes.

As parents, we do whatever we can to ensure that our children are safe and well and are prepared to look after themselves when they take their first steps towards independence. Educating the general public about Type 1 Diabetes will not only provide a greater understanding of this condition but will also make people think twice about interfering with life-sustaining medications and medical equipment.

In the event that you, your child or someone you know has been the victim of bullying or workplace harassment, particularly if they have a medical condition, please be sure to report these incidents to the relevant authorities and, if necessary, seek advice as to whether your particular case should be taken further.

Below is a video made by Diabetes UK about Bullying and Type 1 Diabetes:



Throughout this post you will find links to a number of resources available to parents, children, employees and employers with respect to bullying. These are essentially Australian resources however for international readers there are many local organisations and resources accessible online.

It's good to be home...

Issie and I survived camp - and had a great time - but it is good to be home!

Tim did well at his father's place - however, interestingly, his BGL's were somewhat higher than usual for the entire time I was away. This is strange, because the same thing happened the only other time he has been away from me since his diagnosis - which was when he was at camp in June!

I had figured that perhaps, since it's now more than one year since his diagnosis, that he may be needing a bit more insulin - so was all set to change some of his basal rates (which are all very low anyway) - but then all day yesterday and today his BGL's have been back where they usually are. So, I'm thinking that he's a little more stressed when I'm not around at night? It will definitely be interesting to see what his HbA1c is at his next clinic day which is in about 4 weeks time.

While Issie and I were away our local newspaper, the Manly Daily, FINALLY published an article about the kids and Type 1 Diabetes. I have been trying to get them to publish something for MONTHS - so being Diabetes Awareness Month I really pushed for it and finally succeeded.

Of course, since my internet reception wasn't that great while we were away and my screen on my laptop is not very big I was not able to read the article until we got home, and I've now been able to scan it so I can share it with you here.

I also decided that the only way to get journalists to provide accurate information is to provide that information to them, rather than having them interview you. Unfortunately, in almost every single case that I have heard of, when a journalist interviews someone about T1D they take notes, then go away and write something based on their own notes, that often does not make any sense at all and can lead to more confusion than there was to start with!

So, for this article I was NOT interviewed, I sent a background document to the journalist and told her that it would be better for her to use the information in that background document so as to ensure that her article was accurate and informative.

For the most part she did a good job - the article is short - could have been a bit longer - but she got the point across - and I LOVE the heading, particularly the bit in red "Obesity not a factor for certain types" - which was the main message!

Not quite sure where she got the bit in the Type 1 Diabetes points: "Insulin has to be injected into the body at least six times a day." This was not something I had put in my notes - and indeed, both my kids are on pumps - so it's possible she did some of her own research to come up with this one.

So a WIN for us this week!

Heat stroke!

Even though the temperature here in Bathurst yesterday was nowhere near the hottest the kids and I have ever experienced, not by a long-shot, the lack of humidity here really knocked us for six (an Australian expression).

The temperature here mid afternoon yesterday reached 30.6 C (87.8 F), which, really, is not too bad - but we city-dwellers are used to relatively high humidity levels. Yes, that can make even a minute outside seem like an hour in an oven, however, with high humidity you tend to perspire more, and that means that your body cools itself more effectively. At this time of year in Sydney we're used to humidity levels around the 50-65% range - that's what we're used to.

Yesterday the humidity level here in Bathurst was 19%.

So, that means less perspiring, and more fluid retention - the body can't cool itself properly.

The kids spent the afternoon building their shelters for their camp-out survival night - Issie worked on her tent with her friend. It was tough going in that hot, dry environment - the kids were tired and cranky and had a great deal of trouble thinking clearly.

I watched Issie very carefully throughout the day, reducing her basal rates on her pump and only bolusing for half of the carbs she was eating - the heat was dropping her BGL's very quickly. Also, of course, keeping her hydrated.

The girls finally got their "tent" relatively secure and everyone headed upstairs for dinner. Issie was not hungry at all, but fortunately did eat a little bread. She didn't bolus for anything at all because she was starting to feel really bad and thought she might not keep her dinner down. Her face was red and really puffy, as were her hands and feet - fluid retention. She did not look good.

We made a decision during dinner that Issie was not going to camp outside. A few of the girls were not sleeping out - so this was not a big deal and she knew that she would not be criticised by her peers for making this decision. Yes, of course, she was disappointed - but she also knew she was just not well enough - and I was, of course, secretly relieved. With Issie sleeping inside, I did not have to go searching through the tents, avoiding guide ropes and tent pegs, and trying to get inside a tiny little tent to do BGL's throughout the night!

All the girls went downstairs after dinner to brush their teeth and get ready for bed. I headed into the kitchen to make a cup of green tea - when all of a sudden there was a pounding on the stairs! A bunch of the girls had come running upstairs calling out "Issie's throwing up!" and then, another bunch came up right behind them, "Issie has just passed out!"

Oh crap!

I sent one of the girls to the kitchen to get the emergency kit while I raced down the very rickety, very steep staircase (the building we were in is an old converted stable) and down to the girls' bathroom.

By the time I got there Issie had come around and was laying on the nice cool tiles of the bathroom floor - just as they'd been taught, two of the girls had stayed with her while they others ran for help. She was shaking like a leaf and just looked terrible.

Fortunately, her BGL was fine - a little high (11.4 mmol/L - 205 mg/dL) - since she hadn't bolused for her dinner - but definitely nothing to worry about. So, she had collapsed as a result of heat-stroke, rather than a hypo or hyper event - which, although scary, was a huge relief!

The heat certainly took it out of her - and she was smart not to give herself any insulin with her dinner - for the remainder of the night she sat in the low 5's (I prefer her to be around 7.0 at bedtime) and woke at 4.3 mmol/L  (77.4 mg/dL) - could have been a different story otherwise!

So, if there was any good to come out of a scary situation, it was that I was able to see first hand how Issie's classmates take care of her when something is wrong - and I was impressed with their quick thinking and remembering to make sure someone stayed with her and send someone else get help right away.

And I promise I'll try not to complain about the humidity in Sydney ever again, or at least for this Summer!

School Camp, Stifling Heat and T1D!

As I typed that heading I immediately started thinking of the Witches poem (or song?):

Double Double Toil and Trouble
Fire Burn and Cauldron Bubble...

Issie and I are at her school camp in Bathurst in Central Western NSW.  The following photos are where we are staying - Abercrombie House, which is own by the family that owns the kids' school.

Today is day 2 - and, as was the case yesterday, it is soooo hot I can barely breathe! Hence the "fire burn and cauldron bubble!"

We visited the historical gold-rush town of Sofala, then went panning for gold in the Turon River.

Yes, I know that this truck was not used during the Gold Rush - it just looked cool sitting there like that so I had to take a photo of it!

Issie is having a great time with her school friends, and for the most part I am staying out of the way - but the heat is taking its toll on her.

Overnight she had a hypo at 1:30am - which took 2 juice boxes and 30 minutes to come back up to a level I was happy to let her go to sleep on.

This afternoon the kids are supposed to be making their own "shelter" and the plan is for them to camp outside!

Don't think any of the adults are going to get any sleep at all!

The thing about the climate here in this part of the country is that daytime temperatures at this time of year - and heading into Summer, can be in the mid to high 30's (celsius) - however, overnight they can drop down into single digits.

So, tonight will be interesting.

Mummy, can I make cookies today?

Issie is the house cookie maker - and she makes a mean choc-chip cookie, from scratch, no packet mixes.

Usually, that question would rarely even need an answer, much to the detriment of my ever expanding hips and waistline!

This morning, however, cookies are out.

No, she's not high, in fact she's running a little low, as she has been for the last few days. The problem today is that there is NO ROOM in the kitchen, or anywhere else in the house in fact, to make cookies!!!

Every surface of my kitchen counters is covered in various supplies - divided into various sections, Issie's diabetes supplies, Tim's diabetes supplies, Tim's school lunch bits and pieces for the school week staying at his Dad's place, Heidi Puppy's dog food, treats etc, Fluffy's cat food, treats, fresh bag of litter for her litter box!

The dining room table is covered with toiletries, Issie's clothing in piles, shoes, cameras, hats...

The top of the piano is covered with my computer charger, camera charger, batteries - anything electronic that has to come along with me.

The sofa in the living room is covered with my own clothing, and scattered all over the house are suitcases and duffel bags.

There are sleeping bags airing over the armchairs, baskets of school shirts to be ironed for Timmy to take to his Dad's place.

Next year, I think I will start preparing for school camp on the first day of the school year. 

So, there will be no cookie making today.

Sorry Issie!

Educating the Journalists of the Future!

A few days before the Sydney Twilight JDRF Walk to Cure Diabetes I was contacted by first year Journalism student from the University of Technology, Sydney (UTS), Lucy Thackray, to see whether I would be interested in contributing towards a video assignment she was putting together about the Walk.

It was one of those cases of being in the right place at the right time.

Lucy knew nothing about me, nothing about the support network that I founded and run, nothing about my involvement with the JDRF as a Peer Support volunteer, nothing about this Blog!

Lucy simply logged onto Facebook and looked up the Sydney Harbour Twilight Walk to Cure Diabetes in the Facebook Events listings - and came across my name - which, due to the fact that my initials are AB, showed up at the top of the list of people attending!

Any parent of a child with T1D will jump at the chance to raise awareness about this disease - so of course I agreed to meet with Lucy and arranged for her to come and interview the children and myself the next afternoon.

That afternoon Lucy had so many questions and there was so much to share with her that she ran out of space on the memory card in her University supplied video camera! Not to worry, she would finish her interviews with the kids at the Walk on 27 October.

Below is Lucy's video assignment - which is meant to run between 5-6 minutes. I have no idea how she managed to get it down to this length given that she started out with more than 2 hours of footage!

So, without further adieu...

Walk to Cure Diabetes Sydney 2011 - by Lucy Thackray

Starring... US!



The following video is the first draft - which is much longer - but I thought I'd share this with you anyway because it has a bit more about us, more of the interviews with the kids and myself and has some of the interview Lucy did with my sister, Marjo, who was diagnosed with Type 1 Diabetes at 38 years of age.




I would also like to share with you a lovely message Lucy sent me a short time ago after sending me the links to her wonderful video articles: 

"I feel so lucky to have met you all, I loved every minute of the experience and I laugh every time I watch the video, the footage shows what a beautiful family and what lovely people you all are. Everyone who has seen the video has felt so affectionate towards you and your family and inspired by everything you all do and the fantastic attitude you have. I visit your blog regularly and am so happy I can have a way of keeping up to date with how you all are! xx"


Lucy, the feeling is mutual.

The Blue Candle burns on Blue Friday.

It's a little after midnight on Friday 11.11.11.


Not surprisingly, I'm having trouble getting to sleep.


I write with a heavy heart as the Australian Type 1 Diabetes community mourns the loss of a beautiful young life.

On the morning of Tuesday 8 November, 17 year old Sydney schoolgirl and member of the Australian Girls Choir, Daniella ("Danii") Meads-Barlow passed away in her sleep.


Daniella's parents, Donna and Brian, are very active members of the Type 1 Diabetes community in Sydney and were heavily involved in fundraising for the JDRF and the Australian Diabetes Council. Indeed, they hosted a fundraising barbecue only last weekend.


Following is a post about Daniella's passing on the DBT Corporate Travel, Donna's travel agency, Facebook page:

DBT- Corporate Travel

Daniella Meads-Barlow
19 June 1994 - 8 November 2011
This morning Donna and Brian Meads-Barlow lost their daughter Daniella to diabetes.
Donna and Brian wish to thank everyone for your overwhelming support and to let you all know it's appreciated at this extremely difficult time.

Donna Meads-Barlow was a finalist for the 2008 Telstra Business Women's Award and her travel agency, DBT Corporate Travel, is widely applauded for providing support and assistance to people with Type 1 Diabetes and their families with respect to travel arrangements:

"The Directors and Staff of DBT have committed themselves both financially and resourcefully to one of Australia's most respected charitable institutions. Diabetes Australia (NSW, WA and Victoria).We hope that anything we can offer, or can do for travellers dealing with diabetes is of benefit to you and your family." - From the DBT Travel website.

This is a Blog Post written by one of Daniella's school friends:

A few days ago we were all talking about the controversial advertisement published by the JDRF in the New York Times and Washington post...


1 in 20...


The loss of Daniella is one too many.


I was really hoping that the month of November, Diabetes Awareness Month, would pass without a single Blue Candle being lit.


My thoughts and prayers are with the family of this precious angel.

Dolphins anyone?

This morning I already had the title of today's post in my mind - it was going to be called "10 things I hate about Diabetes".

I had planned to go for a walk with a friend right after dropping the kids at school - we both have a zillion things to do - me getting things ready for camp and my friend is heading off on a last minute trip to China tonight - so we were rushed and stressed - but both agreed that that was no excuse to miss our walk.

On the way to where we were meeting, which had actually changed three times between when we woke up this morning and when we actually met, I was in the perfect mood to be planning what I would write today - I was frustrated and short tempered, not only that, the weather was gloomy, hot and steamy but also starting to rain... perfect.

We finally met up at a carwash where my friend had left her car which, fortunately, is right near the beach where we both used to live. So, naturally, today we were walking along Manly Beach again - a lovely walk.

As soon as the ocean came into view my mood began to lift and thoughts of the "10 things I hate" started to drift away and were replaced by thoughts of just how lucky we are to live in such a beautiful place and that even with the clouds and the stifling humidity, it felt great to be out in the fresh air, hearing the sound of the waves crashing on the sand.

Not long into the walk, as we rounded the corner headed towards Shelly Beach we were met with the most beautiful sight of all.

Soooo beautiful that I have to share it with you...


You might want to view this "Full Screen" - will be easier to see. And I apologise for the shaky camera-work - I filmed this on my iPhone.


After witnessing something so amazing it was impossible to have any negative thoughts whatsoever.

So instead, today I am going to write about the 10 things I LOVE about Diabetes - yes, it is possible to LOVE something about Diabetes!

1.    I love how brave my kids are.

2.    I love that they have learned to stand up for themselves and teach people about this disease so that others have a better understanding of Type 1 Diabetes.

3.    I love that my children have developed compassion and understanding towards others who are dealing with difficult situations or medical conditions and that they step in to defend other kids who are having a hard time.

4.    I love that my kids never say "no" to providing support to other kids with T1D, that they're happy to talk to newly diagnosed kids to help them through the early days and weeks.

5.    I love that I have met some amazing people in the Diabetes Online Community, many of whom have become good friends in the "real world".

6.    I love that I have learned what is important and what is not, and to stop wasting time on crap that, at the end of the day, just doesn't matter!

7.    I love that my daughter has decided that she wants to be a famous fashion designer AND set up her own charity to raise funds for research and awareness about Type 1 Diabetes.

8.    I love that my son is determined not to let T1D stand in his way, no matter what he decides to do with his life.

9.    I love knowing that, through the support group I created after Issie's diagnosis, many other families of T1D kids across Australia no longer feel isolated and alone.

10.    I love that I have learned that I CAN make a difference!

Getting ready for camp!

This post is not an "awareness" post really - because right at the moment my head is spinning with everything that I have to do before Issie goes off to school camp next week.

Issie at Diabetes Camp in January 2011

And of course things are made a little more complicated by the fact that the school (and the camp organisers) want ME there with her (it's a 5 day camp, 2.5 hours away from where we live) - which means that not only do I have to plan for Issie and myself - I also have to plan for Tim - who will be staying with his Dad - who has not looked after EITHER of the kids overnight since they were diagnosed!

Did I mention that my head is spinning???

The issue of school and non-diabetes camps is always complicated. Do you go with your child? Will the school or the camp organisers take care of them properly?

Tim went off to the same camp (same location, same organisers) back in June - here in Australia - that's winter - and the camp is located in an area that does get quite cold during the winter.

A lot of planning went into this trip - the organisers came down to Sydney to meet with me personally to go over Tim's care plan and also to get an idea of the supplies he would be taking with him.

One of the organisers took on the responsibility of overnight BGL checks and was in touch with me regularly throughout the day and night, letting me know BGL's and the level of activity during the day.

It was stressful and exhausting for everyone involved - but Tim had a GREAT time.

But Tim's the easy one when it comes to Diabetes Management - his BGL's don't fluctuate nearly as much as his younger sister and he doesn't stress quite so much. Yes, Issie is a bit of a drama queen.

Issie the Drama Queen at Diabetes Camp in January 2011

So, I was not particularly surprised when the school and the camp organisers requested that I attend the camp, but it didn't really hit me until today just how much there is to plan!

Fortunately I don't need to provide the camp organisers with a detailed management plan for Issie, because I will be there and I will be responsible for her care - but I DO need to provide one to their Dad for Tim!!!

And since Tim will be going to school from his Dad's place I also have to get all of his school things ready for the week, shirts ironed - give his Dad a shopping list for school lunch supplies, teach him how to do site changes (yes, Tim can do them - but only if he has his pump site on his tummy - which he hates - but I think next week he won't have a choice - I don't think his Dad will be able to manage attaching the site - it takes more dexterity than he is capable of due to injuries from a car accident a few years ago).

I have organised a different BGL meter for Tim - one that automatically sends his BGL readings to me via text message - and will alarm to remind him to do BGL's during the school day and at night. So hopefully that will work okay.

OH! Almost forgot - I also have to organise the 2 Pets who are going with Tim to his Dad's place!

Well, I have a lot of work to do - time to start making some lists!

1 in 20...

This FULL PAGE advertisement was placed in both the New York Times and the Washington Post on 2 November 2011 by the JDRF in support of Diabetes Awareness Month and World Diabetes Day on 14 November - and was announced to the JDRF community via the following Twitter message from JDRF CEO, Jeffrey Brewer (@JDRFceo):

"Today the T1D community speaks to FDA re AP thru full page ads in NY Times and Washington Post #T1D #diabetes #JDRF"

Click on image to see original full size advertisement.

Understandably, this "in your face" advertisement has caused quite a stir!

According to Brewer (again, via Twitter - @JDRFceo):

"Lots of feedback on our ad & stated lifetime risk of death from hypo 1:20 or 5%. But research estimates range up to 1:10 or 10%"

Well, it's certainly putting it out there and has the T1D community Blogs talking!

Here are some links to just a few of the many Blog posts about this advertisement:

Okay - so, what do I think of this?

Well, I have been criticised in the past for scaring newly diagnosed families by providing information about some of the less than pleasant aspects of Type 1 Diabetes through posts on the parents support network that I founded shortly after Issie's diagnosis. And while I can see that this can be an issue for some families, the vast majority that I have come across are of the opinion that "forewarned is forearmed."

Following is a comment in response to my post about this JDRF advertisement on that Parents support network, and my concerns about posting information that may be upsetting or confronting to others - I note that this comment has been copied and pasted here with this particular person's express consent:

"That is a startling statistic.. but NEVER toss around information you have found.... if it is out there then I think we need to see it... after all information is power.. and we cant make positive changes in the D community if we don't have the knowledge to fight the good fight. It definately gives me something to think about and after hearing of all the new T1 angels this year this number really doesn't suprise me. We NEED to make a change to the way we look at this. After all what we have been doing is raising money and SOME awareness, but it isnt working how we want it too. Yes I know that the medical profession us our worst enemy so we need to start making more noise to get our voice out there.... I'm just not sure how to do it without becoming a "sob story" to the papers and scaring the hell out of new dx families."

Hiding from these very worrying and sometimes alarming statistics about this disease doesn't actually make them go away.

As parents of kids with ANY life-threatening medical condition we have a responsibility to arm ourselves with as much information about that condition as possible so that we can be alert to any potential problems and take steps to prevent them where possible and to act swiftly when, as often occurs with Type 1 Diabetes, even our best efforts at prevention are just not enough.

If a parent of a child with Type 1 Diabetes is not aware of the risk of death associated with hypoglycaemia would that parent act in an appropriate manner reflective of the potential seriousness of the situation? Probably not.

Parents of kids with Type 1 Diabetes are at the frontline when it comes to the care of their kids. Being on the frontline is scary and is not for the feint-hearted - but it is made so much easier if the enemy we are fighting holds no secrets.

Scare tactics? Perhaps - but if it results in greater awareness about the seriousness of this disease, not only among the non-T1D community but also among people living with this disease, who perhaps do not take it seriously enough or who may have become complacent - certainly not uncalled for.

Feel free to disagree.

Closer to Home: Type 1 Diabetes in Australian Indigenous Communities.

When looking at the problems associated with managing Type 1 Diabetes in disadvantaged communities and developing nations it is important not to overlook these issues that, unfortunately, still exist closer to home.

Type 1 Diabetes is a serious problem within the Australian Indigenous community.

A 2008 report to the Australian Bureau of Statistics about Diabetes in Australia states that:

"Diabetes and high blood sugar combined was 3.4 times as prevalent among Aboriginal and Torres Strait Islander peoples than among non-Indigenous people. Indigenous people living in remote areas of Australia had a rate of these conditions combined about twice that of Indigenous people living in non-remote areas. Diabetes is often referred to colloquially as blood sugar in remote Indigenous communities, and a combined type 1 and type 2 rate is used to compare the Indigenous and non-Indigenous populations"

According to the "Clinical management of Aboriginal people with co-existing diabetes and alcohol related health problems – A review" the Australian Aboriginal community has the 4th highest rate of Type 1 Diabetes in the world.

The following paragraph is a quote from page 1 of this Review:

"The health status of Aboriginal Australians continues to be poor with life expectancy at birth of Indigenous Australians estimated to be around 20–25 years lower than the total population2. Premature death and high morbidity significantly impact on communities, where individuals and families experience continual loss. Endocrine disorders have the highest overall standard of mortality ratio among Aboriginal people who are dying at three times the rate of the rest of the population3. There is a 10 to 30 per cent higher incidence of diabetes among Aboriginal people than is found in all other Australian sub populations4, 5. As one participant in our study noted ‘Some Aboriginal people have been sick for so much of their lives they accept feeling bad as normal, so they don’t even discuss their diseases because they accept them as a fact of life’."

In addition - this report goes on to state, "Mortality in Australians with diabetes is approximately twice that of Australians that do not have diabetes and this is higher among Aboriginal Australians."

Management of Diabetes in Indigenous Communities is a real concern, as stated in the following passage on page 23 of this Report, "The suboptimal management of diabetes in Australia in the context of poor Indigenous health and this population’s concomitant comorbidity health needs, is a cause for concern and requires ongoing education and support."

This Report goes on to investigate the need for Cultural Understanding when dealing with medical issues in the Indigenous Community:

"There is a tendency to assume all Aboriginal health workers are homogenous, offering them a ‘one size fits all’ curriculum. There is also an assumption amongst many non Aboriginal education providers that all AHWs hold the same cultural beliefs, and this is not necessarily so. Diversity exists between Aboriginal groups from urban and rural and remote areas as it does in all Australian society. Consequently AHWs need to develop their own cultural understandings via a ‘look, listen, learn’ model." (pp. 41).

and,

"While from diverse communities Aboriginal people do not generally conceptualise health as a uni-dimensional aspect of life. Health means life. For them health involves the whole-of-life and inter-relationships and inter- dependence between people, and between people and their land are as essential to their health as the management of disease59. Therefore it is important to take a broad perspective that includes control of the physical environment, without compromising community dignity, self-esteem, culture, spirituality, family and social justice." (pp. 41).

To find out more about ways that YOU can help Indigenous communities in Australia visit:

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