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It’s beginning to look a lot like World Diabetes Day. Facebook pages are being turned blue, people are asking is to wear blue and blue circles are appearing everywhere. How November 14 has come around again is beyond me.
So with lots happening this week, here is a quick look at a few things I’ve been seeing in the diabetes interwebs.
The bit where I am ashamed to be an Australian
Yesterday, I read a piece in The Guardian that made my heart break and my brain explode in equal measure.
A woman with diabetes being held in a detention centre on Narau is currently 40 weeks pregnant. Doctors on the island have urged that she be moved to the mainland to receive the care that is required of what is considered a high-risk pregnancy however the ‘medical officials’ (whoever they are) are refusing to do so.
Pregnancy with diabetes can cause problems for both the mother and baby if specialist care is not given. Babies frequently need to spend some time in the special care nursery as they are born with (or develop shortly after birth) low blood glucose which requires monitoring. Mothers often require extra care at the end of the pregnancy, with healthcare professionals keeping a very close eye on the placenta.
Our immigration minister, Peter Dutton, calls this a ‘racket’ and is refusing the doctors’ calls to move her. My heart breaks for the mother and baby. And for Australia. What sort of country am I living in?
Rolling my eyes at concerned healthcare professionals
On page two of today’s Endocrinology Specialist Update with a story about has come out with a story about hacking diabetes devices. Of course, the article highlights how ‘… some doctors and health experts are cautious about the idea of patients taking matters into their own hands’, a comment that made my morning coffee spurt out of my nose.
The president of the RACGP believes that the dangers of such practises would outweigh the ‘perceived’ benefits. He also encourages that ’ … It is important for patients to have a conversation with their GP about any patient-led monitoring system or treatments they use’.
Not sure about any of you, but my GP – and remember, he’s a good one who understands diabetes – would have the first clue about what CGM is all about, let along how it can be hacked to share my information with friends and family.
Great work RACGP and other HCPs in catching up on this. Nightscout (CGM in the Cloud) has been around for a while now, so this really isn’t new information. Its (closed group) Facebook page has almost 15,000 members. This is just another example of healthcare professionals being clearly out of touch with PWD and what we are doing to live as best we can with this stupid condition. Also, #WeAreNotWaiting for device companies or healthcare professionals to do this for us. Because if we did, it would never happen.
Melissa Lee uses words that make sense
Every word of this brilliant piece by Melissa Lee is important where she writes about diabetes being a punchline. This is such a balanced post (published on diabetes magazine, A Sweet Life) and I urge you to read it and forward it on.
From now on, along with sending copies of the Diabetes Australia Language Position Statement to anyone who writes something careless about diabetes, I think I’ll link this too. Thanks, Mel. (The only thing that could make this better is if you were to sing it. Could you do that?)
You want some hope?
Here you go. Read this update from Kerri Sparling about the iLet Bionic Pancreas.
In Melbourne? Want to do something for World Diabetes Day?
Come to this on Saturday and celebrate WDD with other people with type 1 diabetes.
Wear Blue
I was reminded of this fun little video that Cherise Shockley made a few years ago. So get your blue on and raise some awareness about diabetes this week and for the rest of the month.
I was pulled up yesterday for getting things wrong about the discovery of insulin. We were asked in a meeting why World Diabetes Day is celebrated on 14 November, and like the nerdy-goody-two-shoes I am, my hand shot in the air and I was called on. It was like being in year 8 again.
‘It’s Frederick Banting’s birthday. Banting, along with Charles Best, is credited with discovering insulin.’
‘Stop,’ I was told. ‘Before you keep getting things wrong.’
I was then given a history lesson and told that while Banting and Best were responsible for isolating insulin, it was actually Edward Albert Schafer who discovered it.
So have Banting and Best been heralded all along for something they didn’t deserve? Was it in fact Schafer who should be credited? Well, no. Not really.
It is true; Schafer – actually Edward Albert Sharpey-Schafer – did have a role in the story of insulin. But so did others. Many, many others.
I couldn’t sleep last night, so searched on our bookshelves for my copy of The Discovery of Insulin. I remember reading it years ago and found the history of the little hormone that could absolutely fascinating. As with many discoveries, it was a combination of years of work by many researchers and also, some luck thrown in!
It was German medical student, Paul Langerhans, who first identified the clusters of cells – islets – in the pancreas, however could not determine their function. This was in 1869.
A French physician, Etienne Lancereaux confirmed through his research that the cause of diabetes was something to do with the pancreas – in fact, he published a paper coining the term diabète pancréatique (published in 1877). It is Lancereaux who defined two forms of diabetes.
In 1889, two German scientists found that if the pancreas was removed from dogs, the animals developed symptoms of diabetes – excessive thirst, increased urination, weight loss – and died before long. However, these researches – Oskar Minkowski and Josef von Mering – were unable to find the specific chemical responsible for the elevated glucose levels.
This is where Edward Sharpey-Schafer joins the story. Schafer’s experiments – from as early as 1894 – identified that in people with diabetes there was one chemical missing from the pancreas. In lectures at Stanford University in 1913, he named this chemical ‘insuline‘ taken from the Latin word for island ‘insula‘. (Langerhans, in his 1969 dissertation, had referred to the islets in the pancreas as ‘islands of clear cells’.)
However, someone had already beaten Schafer to it. Belgian clinician and physiologist Jean De Meyer is actually credited with coining the term ‘insulin’ in 1909 where he noted: ‘the internal secretion of the pancreas (not as yet named) and which, if derived, as we believe, from the islets of Langerhans, could be called insulin’. Schafer denied any knowledge of de Meyer’s earlier work.
This was all before Banting and Best, in their experiments, discovered exactly what insulin did and how to isolate the hormone. This was in 1921 and it was this work that led to injecting insulin into dogs with diabetes, and in January 1922, the first insulin injection was given to a person with diabetes.
It is Banting and Best’s work that is responsible for me being alive today.
As with any good story, there is controversy and intrigue. Nicolae Paulescu, a Romanian physiologist, is thought by some to have been the real hero in the discovery of insulin. In his experiments, Paulescu showed that a chemical he called ‘pancreine’ clearly lowered blood glucose levels in animals. However, in 1916 when Bucharest was occupied, his experiments were abruptly stopped and he was unable to publish the results of his experiments until August 1921.
I am Australian, but that doesn’t mean I think it’s okay to discriminate against people from other countries.
I am a woman, but that doesn’t mean that I think it is okay to be sexist to men.
I am of no particular faith, but that doesn’t mean that I go around discriminating against people who are.
I am a mother, but that doesn’t mean I think it’s okay to be nasty to women who are not.
I am a straight woman, but that doesn’t mean I discriminate against anyone who is of a different sexual orientation.
I have type 1 diabetes, but that doesn’t mean I stigmatise those with type 2 diabetes.
So when I saw this initiative from JDRF, I immediately ‘blue-ified’ a photo and stuck in on Twitter and Facebook and Instagram. Because it’s true. T1D DOES look like me.
And then I was kinda baffled at the storm that started brewing because this campaign was considered to be dividing the community.
I had to stop and think about that for a moment. As someone who is rather vocal about how destructive the ‘type wars’ can be, I wondered if this campaign was also contributing to the ‘us and them’ rhetoric.
But I really, really struggled to understand why there was the angst.
There are differences between the diverse types of diabetes. But that absolutely does not mean one is better or worse than the other. It doesn’t mean that one is more serious than the other. It doesn’t mean that one is more deserving of sympathy, or research funds, or attention.
Diabetes awareness is important for us all. And this campaign is brilliant in showing that type 1 diabetes doesn’t have a ‘look’ or a poster child. In fact, it shows that type 1 diabetes is not all about children, which is often how it seems. It presents the diversity of the community and it shows that assuming everyone is the same is a mistake.
T1D looks like me. And like 118,000 other people around Australia and a hell of a lot more around the world.
Yesterday, I wrote about a Facebook post that I came across which I felt was powerful and showed the value of social media and support. I shared that post here.
And yet, with one hand, Facebook giveth; and the other it taketh away.
Because then I came across an article about diabetes that make my blood boil. I clicked on the link (which I reluctantly share here) as I stood waiting to board my flight to Brisbane and actually said ‘Oh, for f*ck’s sake’ out loud, impressing the guy in front of me and earning me a dirty look from the woman standing next to me.
The article is actually from the beginning of the year, however, thankfully, I have somehow managed to avoid it for the last 10 months. But yesterday, there it was. Sprouting misinformation about the health condition I live, most reluctantly, alongside.
I only have myself to blame. What did I expect reading the Daily Mail? Certainly not anything resembling decent journalism. And certainly not something based in fact.
The title of the article was the first thing that had me scoffing: ‘I’m scared to go to sleep’: Mother’s 24/7 struggle to keep her daughter alive as they battle form of diabetes that could kill the 15 year-old in minutes.’ (Emphasis all mine.)
Now I am the first person to say that I certainly don’t know everything about diabetes. I’ve never ever claimed to, but I am pretty sure that there is no form of diabetes that can kill someone in 15 minutes. And yet, according to the article, Grace, the fifteen year old in the article, ‘could die within minutes without insulin injections.’
Again, I am no expert. But I know that fifteen minutes without insulin isn’t going to kill me. Or anyone. Even if I ate a whole pavlova washed down with a bottle of full-strength Coke.
But there was the Daily Mail claiming that death would eventuate if there was a quarter of an hour delay in insulin administration. (This bodes most poorly for me and my ‘shit-I-forgot-to-bolus’ days that seem to plague me when there is something more interesting than pinging insulin into my body.)
Apparently, this form of diabetes was caused when …’the disease caused her immune system to eat her own pancreas…’
I understand the need to use language that makes sense to people when it comes to describing what diabetes is all about. But suggesting that diabetes causes our body to ‘eat’ vital organs is the stuff of horror movies, not autoimmune conditions. Surely, the general public can understand the explanation that ‘type 1 diabetes means the pancreas is no longer able to produce insulin’, or something similar that doesn’t suggest some sort of extraterrestrial being has moved in and is feasting on our insides.
I find articles like this frustrating on a number of levels. It is such a melodramatic and false description of type 1 diabetes that it amazes me that anyone could consider this enlightening or educational in any way whatsoever.
This is a perfect example of misreporting of type 1 diabetes, but the voices of OUTRAGE that accompany the potential confusion of type 1 and type 2 diabetes, or the ‘people don’t understand what it is like’ are missing here, instead many are saying that it is a good representation of what it’s really like. And this confuses me greatly.
Because all I see us an article with a lot of incorrect information.
How anyone could consider this article as anything other than disempowering, stigmatising and downright damaging to those of us living with diabetes is beyond me.
‘How’s that working for you?’
‘Sorry?’
I’m at Parliament House in Canberra preparing for a type 1 diabetes and technology event being held later today. Walking through security, three security staff honed in on my upper arm.
‘Your patch, is it doing the trick?’
I was confused. ‘I’m sorry. Excuse me?’
‘Are you an ex-smoker?’
‘Oh! This? It’s not a nicotine patch. It’s a continuous glucose monitor. I have diabetes.’
I don’t know if they believed me. I gathered my bag and moved on through the security area. ‘Diabetes,’ I said again. ‘It checks my blood sugar.’
My invisible illness is pretty visible today.
I made the decision yesterday morning to site my sensor on my upper arm rather than my stomach. The last two sensors I have worn left my skin slightly irritated, so I though I would give the skin around my belly a rest. I also haven’t been thrilled with how long the sensors have lasted – the last two survived a mere 10 and 12 days which is not great when I have been known to get closer to three weeks. (I know, I know, they are meant to work for 7 days. But at over $80 a pop, I do everything in my power to make sure they last as long as bloody possible!)
Before I got to work yesterday morning, three different people had asked what the thing on my arm was. Once I got into the office, another couple of people asked (…don’t even want to remind you all that I work for a diabetes organisation…)
Waiting for a coffee at my local this morning, the barista asked about it and yesterday, at the cafe near work, I could see the people around me looking at my arm and heard them guessing what it was.
At the airport today, a security guard asked if it could be removed and then wanted to engage in a conversation about it, and the woman sitting next to me also asked about it.
It’s been very confronting.
I have never hidden my diabetes. I used to inject at the dinner table before starting pump therapy. And since using a pump, I pull it our from under my clothes to bolus, or see my CGM graph without a second thought. I check my BGL whenever and wherever I want.
But while these diabetes chores occasionally attract a comment, it is nothing like the last two days.
I found myself sitting at lunch today with my right arm cupping the transmitter and sensor to hide it from view. I’ve been cursing the beautiful weather that means I don’t need to wear long sleeves to cover the device. And I’m terrified that people think I am wearing it on my arm to attract attention.
I have always been able to see the pros and cons of having an invisible health condition. Sometimes, the fact that there are no obvious signs of diabetes means that people don’t understand how significant a role it plays in day to day life. But the flip side is that it can be neatly packed away; it can be private. I actually love that about it.
But right now, I don’t have that luxury. Right now it is out, loud and proud for all to see. And I am not comfortable with it at all.
Tomorrow is Drop the Jargon day here in Australia. According to the campaign website, the aim of the day is … for professionals in Australian health, community services and local government to challenge themselves to use plain language.
People working in the health space are being urged to take a pledge to assist Australians who have low literacy make sense of health information and help them navigate our health system. Six out of ten people in Australia have low health literacy, so there is a real need to make sure our messages and information are presented in a way understandable to everyone.
The pledge asks people to:
- Use plain language in all communication
- Not use acronyms
- Explain medical and other technical terminology
- Check that information has been understood by your clients
- Work with a professional interpreter when necessary
- Politely point out when your colleagues use jargon
Diabetes is a condition rife with jargon. I’ve said before: it is like another language. I am as guilty as anyone when it comes to popping in acronyms, technical terminology and assuming everyone knows what I am talking about.
The website includes a link to a handy Plain Language Thesaurus to assist with finding simpler, clearly and less ‘jango-istic’ words when writing health information.
When considering writing in this manner, a lot of sensitivities and intricacies about different conditions are lost. For example, the thesaurus suggests replacing ‘diabetes’ with ‘elevated sugar in the blood’. (Amusingly, the same document suggests – just a page or two down – to replace ‘elevate’ with ‘raise, lift, make higher’.) Obviously, this doesn’t provide a particularly rounded definition or explanation of diabetes, and those of us who ‘get’ this space and understand the words we use when talking about it could criticise the ‘dumbing down’ of what diabetes is all about.
But think about it. If you were new to the diabetes game – just diagnosed or a family member was just diagnosed – and your health literacy was considered low, then this is probably a good starting point. It is certainly better than ‘a touch of sugar’, which are the words used by some healthcare professionals STILL when telling people what diabetes is.
I guess the dilemma for me – as someone who does a lot of writing about diabetes – is that I know that there are some people who want and need more information. Frequently, I write for people whose health literacy is of a higher standard, and there is a need to write at an appropriate level for this target group too. They want – and are able – to read technical and quite difficult jargon.
But I can never ever assume that is the case for everyone. When writing for this blog, I use language very much the way I speak – whatever comes into my head, thoughts going at a million miles an hour, lots of jargon and, if my hands weren’t flying across the keyboard, they would be flying around the air. It’s not really great for people whose health literacy is not high.
However, when writing for work, I am far more conscious of not doing those things. But I suspect, I am not conscious enough. Which is why I will be taking the pledge, and why I think this is a terrific initiative for those of us working in the health space.
I’m feeling a little exhausted today. Fatigued. Burnt out. Drained.
People often ask me how I manage to keep diabetes in perspective. As well as living with diabetes, I work for a diabetes organisation. I am a diabetes advocate, travelling the world talking about my experiences of life with diabetes. I talk to a lot of people about their diabetes. That’s a lot of diabetes – much of it not mine.
Most of the time I manage quite well, thank you very much. I am the queen of compartmentalising and I have learnt to leave work stuff at the office. I turn away from online conversations that annoy, sadden or anger me, and I make sure that the people with diabetes I call friends – who I enjoy spending time with outside of professional settings – are people with similar attitudes to living with a chronic health condition to me.
But this week, it has been hard to turn off the noise.
Online in the diabetes space, there has been a lot of chatter. It is in segments of the DOC I generally stay away from because it is not my diabetes space. But for work purposes, I’ve needed to be in there this week. Watching, reading, and hurting. I am feeling hurt for my tribe.
Let me be very clear here, my tribe is other people with diabetes. It is not their support people or their parents or their partners or healthcare professionals. It is people – children and adults – with diabetes. And in some instances, I don’t think they – we – are being served well.
We are quick to jump in when a healthcare professional or the media is doing a disservice to people with diabetes by misrepresenting the condition. We berate them, saying they don’t know what it is like to live with diabetes so how dare they say what they are saying; that what they are doing is adding to the considerable stigma surrounding diabetes. Yet there are people living with someone with diabetes – but do not have it themselves – who are just as guilty of stigmatising those of us living with it every day.
While I acknowledge and understand the importance of those other people – it takes a village, a fucking village, to live with diabetes – it cannot be denied that the only people who really know what it is like to live with diabetes is those of us who are actually doing it. Day in. Day out. As much as a loved one says they too are living with it, they are not. Their experiences of diabetes are no less valid, no less important, no less part of the fabric of the diabetes space. But they are not the ones living with it every day.
I am not minimising the experiences of those walking alongside us. We need you; we are so grateful to have you there. But you are not walking in our shoes. In exactly the same way that I am not walking in yours, and therefore, cannot understand exactly what it is like to love someone with diabetes.
I’m tired of thinking about how some of the narrative about life with type 1 is playing out. I fear that it is painting a life lived alongside someone with diabetes as hopeless. My life is not hopeless. My family’s life is not hopeless because I have diabetes.
So this weekend, I am taking a break. My online interactions will be about other things – cookie recipes (I have some new cutters from Stockholm that need breaking in), Nutella memes and finding inappropriate e-cards to send to my sister.
Have a great weekend.
On Monday evening, diabetes got a mention on the ABC’s Q&A program. Read all about it over at the Diabetes Victoria blog today.
After writing on Monday about the confusion I feel when I complain about the lack of CGM subsidies in Australia and my out of pocket expenses when considered against countries where insulin is out of reach of many people with diabetes, this piece is about changing the landscape here in Australia. Write a letter, make an appointment to see your local MP, tell your story.
And if, just like me, you feel conflicted about the inequality of health care around the globe, think about making a monthly donation to the Spare a Rose, Save a Child campaign, raising money for Life for a Child. I just did it now – incredibly easy to do.
Also, read about T1 International’s efforts and take part in their We Are The WORLD in World Diabetes Day campaign.
Around $80 bucks. That’s how much it costs for a CGM sensor in Australia. It’s expensive and it is completely out of reach of most people living with type 1 diabetes. There is no subsidy: you want it, you pay for it yourself.
I have been wearing a sensor on and off for the last eight or so years, as long as CGM technology has been available in Australia. In the last two and a half years, it’s been on more than off. And recently, I have found myself feeling completely lost without it.
I know how fortunate I am to be able to afford it, I really do. And yet, after I called the company to make my last order, and read out my credit card details, I heard myself complaining about the cost – to pretty much anyone who would listen.
And there, in my world, seemingly oblivious to anyone living outside it, my indignation at having to fork over well-over $300 to pay for the device that I need/isn’t a privilege/keeps me alive/keeps me out of hospital/is necessary for me to be well/helps my quality of life/reassures me/reassures my family (or whatever lame-ass reason I was sprouting) was being repeated ad nauseam.
But sometimes, this privilege is brought home in ways that make me feel shamed and ashamed.
At ISPAD + APEG last week, I attended the IDF Life for a Child update. I make sure that I go to all the sessions run by the LFAC team at any conference I go to because I want to support the program in any way I can.
Many people will have heard of the Life for a Child program. I’ve written about it before – specifically when promoting the very valuable Spare a Rose, Save a Child campaign.
17,000 children from 47 countries benefit from the program. The focus and vision of LFAC have shifted slightly in recent years. It has moved from keeping children and young adults alive to improving health outcomes and quality of life.
The education and training initiatives developed by LFAC are making sure that there is sustainable impact being made to the lives of people living with type 1 diabetes. Much of this work is done through strengthening existing centres, which means more money going towards actually helping people, rather than the establishment of new institutions.
Each time I hear about LFAC, I walk away with a mixture of feelings – most of them associated with guilt.
I feel guilty at what I have, when so many have so little. But more so, I feel bad complaining about what I have. Feeling like a spoiled ‘but-I-want-a-pony’ kid is pretty confronting. And disgusting!
I feel inspired by the kids benefitting from the program. I hear their stories and I can’t help it but feel inspired. And then I hear Stella Young’s word in my head and know that they are not there to inspire me. They are just living. And then I don’t know what to do or how to feel. (And while Stella Young may have been referring to images of people with a disability when she coined the brilliant term ‘inspiration porn’, it works just as well when referring to these kids with diabetes.)
I don’t know how I go about acknowledging my privilege and not feeling guilty about it. I don’t know how to complain about some if the things that piss me off about diabetes without thinking ‘but it could be worse’.
I get mighty peeved when I hear people say ‘At least it’s not cancer’ because it starts to make different health conditions a competition. So is it okay to say ‘stop complaining – at least you don’t live in <insert country name> where you wouldn’t even have insulin and would be dead in a year’?
Diabetes is crap – it is a terrible condition, there is no doubting that. And I think it is fair to say that for some people, it is more difficult and it is more unfair. The things that make it harder for some are so beyond anyone’s control, which probably makes it even more difficult. But is acknowledging that enough?
‘So, how many of you have patients who make treatment decisions based on their CGM?’
This was the question posed by one of the healthcare professionals speaking at this afternoon’s Dexcom symposium at ISPAD.
A few hands were raised. Not many; only a few in the packed room. Two of the hands that shot up the fastest belonged to a colleague and me, both of us referring to ourselves as the ‘patients’ – or perhaps each other.
We looked at each other and half smiled, shaking our heads. We knew the answer – we knew what the truth was. The response in my head was ‘Of course we do. Of course. I treat based on arrows telling me I am heading for a low without checking my BGL – I did it just before walking into the session.’
The question came after the announcement that treatment decisions could be made based on sensor readings from the new (yet to be released in Australia, but launched already in the US and in some European markets) Dexcom G5 CGM.
There has been much excitement from HCPs presenting about this new development in CGM – both at this conference and at EASD. It has huge implications because essentially, it is removing the need to do finger prick BGL checks, apart from the required twice-daily calibrations.
But it has been presented as if people using this technology have never, ever thought before to treat based on what their CGM data is displaying.
I doubt that any person using CGM has found this announcement particularly startling or surprising in any way.
But this is often the case. The release of new evidence or new guidelines or new data heralds a shift in ‘approved’ diabetes management or techniques and suddenly, there it is on all the shiny brochures and in all the shiny presentations.
And the people with diabetes who have been doing this, or have known this or understood it to be true from some time, look at each other slightly puzzled at what all the excitement is about.
I understand the importance of a strong evidence base. And I understand the need to be safe – especially as part of regulatory and approval processes. But sometimes, I can’t help but wonder why it takes so long for the evidence to catch up with what is already known, and match the anecdotal experiences that we hear and share.
It was great to have the speaker acknowledge that the show of hands after her question was probably not accurate of what was really happening.
‘You know your patients are probably doing it and just not telling you, right? They don’t want to be reprimanded for not doing what they are supposed to, but they probably are making treatment decisions based on their CGM data.’
It was probably the most frank thing we heard in that session – the twofold acknowledgement that PWD are already doing something that works but is ‘off label’, but are afraid to tell our HCPs about it, lest we get told off.
This time, when my colleague and I looked at each, we smiled widely. And we nodded. Because we knew it to be true.
Diabetogenic 