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:

or

Insulin for Life

So far in my posts about raising awareness of Type 1 Diabetes in poor and developing countries I have mainly focussed on the International Diabetes Federation and Australian Diabetes Council program called Life for a Child.

Today I am looking at another organisation, this one is called Insulin for Life.

Insulin for Life is an organisation established in 1999 in Melbourne, Victoria, Australia - with the following objectives (taken from the Insulin for Life Lecture PowerPoint Presentation - Download):

• urgent short-term and continuous overseas supply of insulin and other items
• mentoring similar programs in other countries
• sustainable improvement in the cost of insulin to the user and in its availability in countries in need

The organisation's Active Supply Program includes the following countries:

• Bolivia
• Ecuador
• Congo (Republic)
• Congo (Democratic Republic)
• Rwanda
• Tanzania
• Cambodia
• Kyrgyzstan
• Russia
• Turkey
• Uzbekistan
• Ukraine
• Maldives

Many hospitals and diabetes clinics around Australia and internationally collect unused and in-date insulin and other supplies from families who no longer need those supplies for reasons such as change of medication or insulin delivery method (ie. going from injections to insulin pumps usually requires a change in insulin type and reduced need for long-acting insulins). 

Those supplies are then directed to Insulin for Life who arranges for distribution to children in areas of need.

It is important that while we want to make sure that our communities are aware of Type 1 Diabetes and how it affects our own kids, however, we, as parents of children who have relatively easy access to these medications and supplies have a responsibility to ensure that we do whatever we can to help those who do not.

Please check out the Insulin for Life program and if your hospital or diabetes clinic is not yet involved, ask them to look into it and see if they can join in.