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.

Blue Friday and Sister Margueritte De Clerck

We are now on day 4 of Diabetes Awareness Month - not only that, it's also Friday - and during Diabetes Awareness Month Fridays are "Blue Fridays". Every Friday during the month of November, we will be wearing BLUE for Diabetes Awareness.


Check out the Blue Friday's Facebook page!

And, every Friday during the month of November my blog posts will be written in BLUE!


Here is a short video about Blue Fridays:





Now, since it is my aim during Diabetes Awareness Month to raise awareness of the issues faced by children with Type 1 Diabetes living in remote areas and developing countries I have embedded a video featuring Sister Margueritte De Clerck, a Belgian nun who has dedicated her life to helping people with diabetes in the Democratic Republic of Congo.







The following passage was taken from an article by Stephen Moss published in The Guardian on 5 April 2005 and refers to Moss' first encounter with Sister Margueritte:

"In Kinshasa, a few days later, I meet perhaps the coolest missionary of all. It is Sunday morning and a mini-coup has broken out. At three in the morning, I had heard the rattling of windows in the mission house in which I was staying, but thought it was a typhoon sweeping across the Congo river. It wasn't; it was mortar fire. My driver has been attacked, his car stolen; there is shooting just a few streets away. I am panic-stricken.

Sister Marguerite De Clerck, a Belgian nun who had seen it all before in her 50 years in Congo, calms me. "Sometimes nothing happens; sometimes everything happens." She is hanging on in the mission house waiting for the shooting to die down before making her way to her office across the street. For 30 years, she has been running an anti-diabetes programme in Kinshasa. Once, there were 60 nuns from her order - Notre Dame de Namur - in Congo. Now there is just her, an unforgettably vital and resilient 77-year-old. Her mother, she tells me, died only a few years ago. Congo will have Sister De Clerck's services for a while yet. "I will go home when I can no longer make a contribution," she says. "I don't want to be a burden on these people." When the streets are a little quieter, she gets up to leave. "Enjoy your stay," she says."

Sister Margueritte De Clerck is a true inspiration.

T1D is everywhere!

Have you noticed, as a parent of a child with Type 1 Diabetes, that you tend to automatically think of T1D with almost EVERYTHING - even something seemingly not T1D related?

I caught myself doing exactly that today!

I was out looking at and test driving new cars. Now, how on earth does T1D have anything at all to do with the selection of a new car - except of course making sure that it's going to run fine and get you from home to the hospital safely if necessary? But then, you'd think about this anyway - even without T1D in your life!

I've looked at a bunch of cars over the last month or so - and I think I finally found the one I like today - but of course T1D had to get it's little nose in my business once again to help tip the scales to that particular car - and do you know why???

This particular car has tray-tables for the back seats - like what you have on aeroplanes!

The first thing I thought of when I saw those tables was, "Hey, how cool, that will make doing BGL tests in the car so much easier - the kids will have a place to put their test kit!"

I think T1D has officially hijacked my brain!

Okay - onto another subject.

So, this is the 2nd day of November - and of course, November is Diabetes Awareness Month.

Yesterday I posted about T1Day and also about children living with T1D in developing countries.

I decided to have a chat to my kids about this. They're smart, sensitive kids and they are very conscious of doing what they can to help the less fortunate.

Issie has decided she wants to be a famous fashion designer, but she also wants to have her own charity to raise money for T1D awareness and research.

After talking to the 2 kids about these kids in developing countries Issie told me that she now wants "her" charity to raise money for these kids so that they don't have to walk hours and hours to get their insulin. And I think this is great.

Of course we all want to raise money for a cure so that NOBODY has to live with this disease - but the fact is that the cure is not here yet, and every day more and more kids are being diagnosed!

We are so lucky to live in a place where we have access to the best medications and treatment options - and it is very sad to say that we often take this for granted.

I could never imagine having to make the choice to let my child die because the cost of the medication to keep him or her alive is more than our entire family income for the year!

No parent should have to be in a position to make a decision like that.

So, my aim for Diabetes Awareness Month is to bring to attention those kids, those families in developing countries; to make people aware that this disease kills, on a daily basis, and in many cases, the death of these children is needless and entirely preventable.

Yes, I have two kids with Type 1 Diabetes, and that's not easy - but I know that my kids are the lucky ones.

Today is T1 Day! Give Type 1 "the finger!"

Today, 1 November 2011 (or 1.11.11) is the inaugural T1Day - Type 1 Day.

1 November marks the start of the International Diabetes Federation's Diabetes Awareness Month - and the JDRF have decided to dedicate the first day of Diabetes Awareness Month to Type 1 Diabetes.

The launch kicks off with a video called "Give Type 1 The Finger"

Check it out!



You can find out more information about JDRF's T1Day by visiting the website:

And also by visiting the myJDRF Facebook page:

One of the most important things about raising awareness about Diabetes during Diabetes Awareness Month and, in particular on T1Day and World Diabetes Day on 14 November, is to remind people that although in most Western countries Type 1 Diabetics more often than not have ready access to insulin and medical supplies, there are many, many people in less developed countries who do not.

Please watch the following videos - and let's get together this month to do whatever we can to give this young man and others just like him access to the lifesaving medication that those of us who are more fortunate sometimes take for granted.

To find out how YOU can help please follow these links:

Below is the Award Winning "Life for a Child" documentary by Ed Lachman. The documentary runs for a little over 28 minutes. Please take the time to watch it. A larger version appears in the permanent links section at the bottom of this Blog.

View this movie at cultureunplugged.com

Click to Watch Insulin For Life Video