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Yesterday, on her first day of school, the kidlet’s English class was about autobiographies. So, we had a long chat about some biographies and autobiographies we’d read – and ones we wanted to read – and why they are a really important way for people to share the stories of their life.
Story telling is one of the most powerful ways to record events, emotions and life experiences. Others who may be going through similar experiences can feel great comfort knowing that others have not only lived through certain situations, but stuck around to tell the story! And it is also a fabulous way to share stories with those not familiar with different places, circumstances or surroundings.
Our stories have the ability to inspire, offer an opportunity to learn, and help make sense of things around us.
So, it took me no time at all to respond with a resounding ‘YES!!’ when I was contacted by Anna Sjöberg from Anna PS and Sofia Larsson-Stern from Diabetesia, asking me to be in their book about people living with type 1 diabetes.
The end result of their hard work is a fabulous book – ‘We can, want and dare …and we have type 1 diabetes!’ – and it features people from all over the world telling their stories of life with type 1 diabetes.
When putting together the book, Anna and Sofia wanted to provide real-life stories from people with type 1 diabetes from all walks of life: from kids and teens
(such as this one who is, quite simply, AMAZING!) to adults doing all sorts of amazing extraordinary, and every-day things. There is a Brooklyn-based chef, an incredible young advocate from Sweden and another Swede whose Instagram profile describes him as a Multisport Team Ninja Warrior! Oh, and a Melbourne blogger and activist.
The books was launched it its original Swedish-language version last year on World Diabetes Day and the English-language version has just been launched and is now available.
This book is not just for people with type 1 diabetes, although, with its stories of hope it certainly would be a wonderful thing to give someone newly diagnosed! It is also for friends and families of those living with type 1, and people who really have no significant connection to type 1 diabetes, because it provides an understanding of the complexities of the condition that we live with and offers a very personal insight into life with type 1.
GIVEAWAY GIVEAWAY GIVEAWAY
I have three copies of ‘We can, want and dare …and we have type 1 diabetes!’ to give away to Aussie-based readers of Diabetogenic, thanks to the team at Anna PS. Just click here and send me a message telling my why you would like a copy. Keep it short – brevity is key here!
I was invited to provide my profile for the book and received no payment for my contribution. I will receive a signed copy of the book for my bookshelf, though, and can’t wait to see it!
November is a big month in diabetes. For those of us living in Australia, the main event is World Diabetes Day on 14 November, but I’m certainly happy to be swept up in the USA’s Diabetes Awareness Month.
For the next four weeks, there will be a lot of diabetes awareness about and it’s a great opportunity to speak about real life with diabetes, dispel some myths and set the record straight when someone tells you to increase your cinnamon consumption to cure your diabetes.
Get your blue on…
Blue is the colour of diabetes and, this month, it’s my colour of choice! (Including this potentially misguided nail colour. My manicurist actually said ‘Are you sure?’ when I picked it our yesterday.)
I’m stuck with these nails for a couple of weeks now, but plan to accessorise with a lot more blue (including the blue mascara and eye liner I bring out just for November!)
Diabetes is not about numbers. Until it is.
JDRF has this nifty calculator on their website that (somewhat scarily) adds up the numbers to show just how many diabetes tasks we’ve undertaken in our diabetes lives. Here’s mine (as of yesterday).
I am the first to say that diabetes is not all about numbers, but I do love this because it shows the magnitude of this condition and its relentlessness. You can get yours here.
(And JDRF UK has their own here.)
What is diabetes awareness month all about anyway?
And this take from a Diabetes Dad…
And Tom Karla (AKA Diabetes Dad) has this to say about just who this whole month is for. (Spoiler: it’s not for those of us already living with diabetes!) As I said on Twitter yesterday – I spend a week every July (during National Diabetes Week in Australia) trying to explain this. Will be forwarding Tom’s post far and wide from now on!
7 day online peer support…
Did you know that there is a free online Peer Diabetes Mentoring Summit running right now (until 7 November). Diabetes Dominator, Daniele Hargenrader, has coordinated this fab event and you can claim your free ticket here. So many terrific sessions with great speakers to follow!
There’s a fun photo challenge for the month from Project Blue November. Using the prompts they’ve provided, post a photo each day to your SoMe feeds to share your life with diabetes, tagging the pic with #ProjectBlueNovember. Here are the prompts:
What I’d tell myself at diagnosis..
Lovely piece from the team at Diabetes Forecast where some PWD share the wisdom they would give their newly diagnosed self. Read it here.
And here’s the letter I wrote to my newly diagnosed self a few years ago. It still holds pretty true!
The International Diabetes Federation’s WDD selfie app (download for free at the app store) allows you to add a blue circle – the international symbol for diabetes – to any photo you’d like.
Big Blue Test
And of course, November means that it is time once again for the Big Blue Test, brought to us by Diabetes Hands Foundation. Over 125,000 BBTs have been logged since the program started in 2010. Easy peasy lemon squeezy instructions are:
Get logging for good karma. There’s even an app you can use to make it super easy. (And yes – I’ll be logging before and after I take the pups for a walk!)
Keep in perspective.
It’s really easy to get overwhelmed by everything diabetes that’s going on this month. If your SoMe feeds are anything like mine, they will be overtaken by diabetes and there really does seem to be no escape.
Which is why it’s important to remember that we are about so much more than diabetes and find time in the month to do things that remind us of that. We have a couple of birthdays to plan and an upcoming trip to New York to think about – all things that will hopefully keep the whole month in perspective. Plus there is always baking…maybe some cookies…
Twelve hours after arriving in Munich, I found myself in a beautiful tree-lined side street of the city at a diabetes bloggers event coordinated by Roche Diabetes Care. Fuelled by nothing more than coffee and jet lag, I walked into a beautiful building and found myself surrounded by diabetes advocates from around Europe who were probably trying to work out why an Australian had crashed their meeting.
Firstly, a little about this group. Roche convened the blogger group a few years ago as a channel to build a relationship with PWD in Europe. (Roche has had a long history of working with consumers. I remember back in 2012 watching the Roche Diabetes Summit in awe and then trying to replicate it here with Australia’s first and only SoMe Summit.) In a very smart move, they engaged DEDOC leader and nice-guy extraordinaire Bastian Hauck to be the liaison between Roche and the community. Bastian has done a stellar job bringing together some absolutely amazing and influential advocates to be part of this work.
The group has now met a few times, and at this year’s EASD, they opened the door to an Australian (slightly less weird now that Australia is part of Eurovision, which, obviously, is the new gold standard measure of inclusiveness. First Eurovision digression.)
The first part of the afternoon session was a demonstration of the yet-to-be-released Roche CGM. A short presentation showed how the device works, with an explanation of the technology. The timeline for release of the product is later this year with launch markets being Sweden, Norway, Netherlands and Denmark.
We were then able to have a play with the device, inserting sensors into ‘fake’ skin pads and just getting an idea of the feel, size and look of it. The CGM app is completely customisable. It looks great – super clean and easy to use.
In a room of generally tech-savvy folk, you can imagine that there were a lot of opinions and feedback about the device. Most, if not all, of the participants were wearing at least one medical device – whether that be a pump, CGM or flash GM (and the slightly OTT Aussie who was wearing all three). We are obviously not the norm, but given our knowledge and experience with diabetes tech, we certainly did have a lot to say.
There were some things that people really liked about the product. Accuracy was outstanding with MARD being comparable to Dex G5. The profile of the sensor was good – about the same as – maybe slightly lower than – the G5 on my arm when compared side by side. Insertion was super-easy and definitely doable with one hand. And the tape holding the sensor in tape is, apparently, better for people with skin allergies.
But as a first generation CGM, there were some limitations that people felt would frustrate them. The lack of integration with the Roche pump, for example, was of concern – however, this will be remedied with future generations. The first gen will only be compatible with an HTC phone (in a room full of very pro-Apple people, this was not particularly well-received) but, again, this will be addressed with future releases.
Also most unwelcome was the factory-set sensor life. Seven days without the possible of restarting is very surprising. There were some murmurings in the room about this setting a new precedent that other sensor makers would follow. Given that I am currently on day 18 of my sensor and the accuracy is spot on, I’d be bloody furious if I’d had to bin it 11 days ago!
Many of us frequently complain about the waste produced with all our device consumables, and there was some concern that the single-use sensor applicator contained a lot of plastic. Look, this is something that I personally struggle with. Every time I change my Dex sensor, or put in a new pump line or cartridge, I look at what needs to go in the bin and wince. It frustrates me each time I rip open the packaging for a new Medtronic Quickset (my preferred line), a bloody little cap falls out, usually to the floor. I have been using these sets since they first were released (maybe eight or ten years?) and never – not once – have I used the cap.
I get it – we need these consumables to be sterile. And safety and avoiding infection is paramount. But still, some of us are very concerned at the landfill we are contributing to!
This discussion was very open. We were welcome to tweet, Instagram, Facebook (and blog) everything that we saw in the room, sharing it with the world. Following the demonstration, we all participated in real-time online feedback, where we commented on what we liked and disliked about the device. Our results and remarks were then shared on a screen for all to see.
Can we, for a moment, just consider how novel and out of character this is? Here is a company talking about a device that has not been released yet. And they are talking about it with a room full of over-sharers who all had screens open to various social media platforms ready to tweet, photograph and provide personal commentary. I have never seen such an open and transparent way to get feedback on a diabetes product, and the team from Roche should be absolutely commended on this approach. More please from more companies!
For the second half of the meeting we spent a most fun couple of hours where we played around with app development. My group – obviously the best – created an app that linked our CGM app with a juice machine to respond to low glucose levels. It also turned on bedroom lights if we were low overnight, to help wake us up. And if the wailing alarms of the app were not cancelled within 15 minutes, an ambulance was called to come and make sure we were okay. I know! Brilliant, right?!
Overall, this was definitely a valuable afternoon learning about new product and also being given the opportunity to meet with some very smart and active diabetes advocates. You bet we were there to be told about Roche’s new CGM, but that was only part of the event and no one in the room is so naïve they don’t know it. But the chance to share ideas and projects and plan for truly global work together outside the device company space was also achieved.
POSTSCRIPT and DISCLOSURES
I’m going to ignore the online discussions that seem to pop up at any conference where PWD manage to score an invite…. Actually, who am I kidding, I’m not. Because I am a little sick and tired of the inevitable complaining and suspicion and passive aggressive comments. I’m a huge advocate for PWD being invited to HCP conferences (I may have written about it once or twice here). For us to get here, we need financial assistance because travel is expensive as is conference registration. So when pharma or device companies offer to bring PWD together to engage in a session they are running – and also provide us with access to the conference, then you bet I am going to think it’s a great idea.
Transparency is important and on this little blog, I will always disclose any arrangements, support, funding or product in place with any company.
So…my disclosures? Well in regard to Roche, none really. I don’t use any Roche products at the moment. I have in the past used their meters, which I have funded myself. I have been an invited speaker at the Roche Educators Day at the ADS-ADEA conference two years running now. And I wrote and disclosed all about that at the time here and here.
Roche did not contribute to my travel or accommodation costs at all to attend EASD this year. They did provide me with press registration, but I had already organised my own, as I do for all conferences I attend. Oh – and they did invite me to a dinner after the blogger event, but jet lag had kicked in so I politely declined. There was no expectation from Roche that I would write about the event (or comment during it). They don’t own my words, I do. But I am incredibly grateful that they are engaging consumers in this way. So thank you to Ute and the team so very much!
As for my disclosures for attending EASD? For the third time, they are all here.
The first message came at 7.58pm. I was finishing up a meal of dumplings in the city and about to head into Carlton to see a movie. There on my phone was a call for help from an Aussie friend on holiday in Europe. She had forgotten to pack reservoirs (cartridges) for her insulin pump and she was the first week into a six-week trip.
Of course, she had called the local branch of the pump company and, (of course), she had been told that it would take time (as in three days!) to set up an account, before any product could even be sent out. This was not the easy resolution my friend needed in order to simply continue enjoying her holiday.
We sprang into action. As we waited for our bill to arrive, I messaged Annie straight away because if anyone can hook someone up with pump supplies within the UK, she’s the person to do it. She immediately took to Facebook and put out the call, all the while messaging me for details of where and how to get the cartridges to my friend.
As my friend would be leaving the UK and heading to France over the weekend, I also send a couple of Facebook messages to a couple of friends in Paris to see if they could help out. In the car on the way to the movie, I fired out messages and replies.
And finally, I took to Twitter, with a call out to friends in the #GBDOC, with a tweet that was retweeted to reach as many people as possible
My phone was in meltdown with messages (text, Facebook, Twitter) flying in from across the globe.
And then, at 8.25pm, it was resolved, before the movie started. Annie had found someone who had the right cartridges and would pop them in the post to be delivered to London, arriving on Thursday. Plus, back up in France has been organised too – just in case!
It was sorted in 27 minutes. All with a few messages, clicks and tweets. We didn’t worry about setting up accounts or timezones or working within business hours (it was after-hours here and early in the day in the UK!). Continents and business zones didn’t matter either. The only consideration was getting the cartridges in the hands of my friend so her pump would continue to deliver insulin and she could focus on enjoying her holiday.
So, there is no sequel to the Pumpless in Vienna story to be told here, I am pleased to say. Because the DOC did what it does best in these situations. It delivered like a well-oiled machine!
Apparently, I went to Munich. I was away for 6 days, and 60 hours of those days were spent in transit. I believe that, (as I deal with jet lag, hypoglycaemia, and mainlining caffeine), it is fair and accurate to say that I am too old for this shit.
I am also incapable of forming paragraphs. But dot points are fun! Here are some observations and a few silly thoughts from last week. (I’ll write some sensible things when my brain is back in the same country as the rest of me.)
- I am told by people Munich is a lovely city. I will have to take these people’s word for it, ‘cause I saw very little of the city.
- I did not buy a dirndl and for this, I will be eternally sorry. As will my husband.
- The EASD conference itself was, as predicted, very rats and mice-y. I sat in a number of sessions and wished I was a mouse (while wishing my diabetes away). Alas, I am not a mouse. And I still have diabetes. Damn.
- I did not get sick of laughing at the fact that one of the halls at ICM Messe München is called Langerhan Hall. Also, I did not get sick of saying ‘I wonder if my islet cells are in there’ – to everyone within earshot. Even if I didn’t know them.
- Obviously, Grumps was not as amused by this as me.
- As was the case at ADA, my arm is more recognisable and famous than me. A barista at one of the exhibition hall stands said, as making me a decent coffee, ‘Oh – I know you. I saw your arm the other day near the station.’ I am a walking billboard for Rockadex! (I am not sponsored by Rockadex and purchase my own patches.)
- Dr Kevin Lee from Queensland is a tweeting machine! In fact, I think the thing I was proudest of at EASD was seeing him tweet! (Actually, probably should say that Professor Mark Cooper’s giving the Claude Bernard Lecture was also a moment of national pride, but Kevin’s tweeting was on another level!)
- One of my favourite talks was about diabetes, cardiac health and exercise (go on, laugh….), but that was mostly because presenter Dr Nikolaus Marx, finished up with a discussion about passive exercise and cardiovascular events during the World Cup. If you were in the room, it was me who cheered when he mentioned the increase of cardiac events after Italy beat Germany. (#VivaItalia!). For clarification, I was cheering at Gli Azzuri’s victory, not the number of Germans having heart attacks. (By the way, this was a real study. Published here.)
- A HUGE shout out to these three women. AADE presidents elect, past and present, Nancy D’Hondt, Deb Greenwood and Hope Warsaw are absolute advocates for and champions of people with daibetes, and peer support. This is them at the docday blogger and advocate event. This level of commitment by HCPs to consumer engagement is enlightening, and a lot could be learnt from their example here. Thank you. Thank you. Thank you!
- It was wonderful to see quite a lot of discussion about AP. Anytime someone wants to actually get these into market and into the hands of people with diabetes, that would be just great! Thank you.
- I may have screamed a little when I wandered through the Association Village to the excellent historical display of diabetes by the German diabetes Association. Terrifying might be the word for these needles. I said a little prayer of thanks to the diabetes angels for modern day tech, and for being diagnosed in 1998.
- I need to take a break from twitter. This was the state of play when I said good bye to the conference.
And finally, a word about language, because I am unable to attend a conference and not talk and write about it. (I think it’s actually become a law somewhere.) This probably deserves a post of its own and that may happen, but here we go anyway.
This is the fifth EASD conference I have attended, and going in, I know that it is going to be challenging, language-wise. There often appears to be very little consideration that there could be PWD in the room listening in to how HCPs are speaking of us. In the opening ceremony, I tweeted this at EASD president, Professor Juleen Zierath:
I was a little disappointed at Professor Mark Cooper’s constant use of ‘diabetic’, but it was by no means any more than most of the other speakers. I suppose I just hold Australian speakers to higher account given the work we have been doing here around language and diabetes.
This tweet generated quite a lot of discussion, and came about after I was exhausted and annoyed and mostly frustrated by the way speakers were referring to people with diabetes.
Perhaps the best response was from Nick Oliver:
Here’s the thing – and it is something I spoke about during my talk at the DOCDAY event. Language DOES matter. We all know that. It’s completely and utterly disingenuous to say it doesn’t. For some people, it doesn’t bother them and that’s terrific. For others, though, it really does. So why would anyone do something that may offend when it is so easy to avoid that?
DISCLOSE DISCLOSE DISCLOSE
My (economy fare) flights and accommodation expenses were covered by AMSL and J&J. I was attending the EASD conference mainly to attend the J&J DOC exchange meeting which I was involved in preparing and presenting. No one ever expects me to write anything. These are my words and observations only. (And seriously, have you seen what I have just written? No one wants to be associated with that!)
We watched the movie Looking for Alibrandi with the kidlet the other night. I remember when the book came out. I’d left school, was in first year at Uni, and still trying to work out who the hell I was. My mum, sister and I all read the book and couldn’t stop talking about it.
That book was one of the most important things I read when I was younger, because it resonated so much. The idea of not understanding where I belonged had shaped a lot of my adolescence, and was continuing to confuse me as a young adult. I know I wasn’t the only one feeling like that – many kids of post-war migrants felt the same way. Not that we really spoke about it, which was why Looking for Alibrandi was so important. It put into words the jumbled thoughts in my head.
My parents moved from Italy to Australia in the late 1940s (my dad) and early 1950s (my mum). They both grew up here – all their schooling was in Australian schools. They speak English perfectly without a hint of an Italian accent.
We didn’t speak Italian at home, and weren’t particularly involved in the Melbourne Italian Community. Most of my parents’ friends were not Italian, and I only had very, very few Italian friends. At secondary school, there were a number of Italian girls whose families would have been similar to mine, and yet they weren’t the girls I hung out with.
I wasn’t really sure where I fit. I didn’t belong with the Italian girls, because their parents were all a lot stricter than my kinda strict parents; they all spoke fluent Italian – often to each other – and were more involved in the Italian community. Equally, I didn’t really feel that I belonged with my ‘Aussie’ friends because they totally didn’t get the overprotective Italian father thing I had going on at home. Or my love of Fiats. (Or that we had Nutella in the cupboard at home!)
I was in this kind of middle ground that left me wondering where I belonged. And it is a position in which I find myself again today in the diabetes world.
I am a person with diabetes. But for the last 15 years (so, for all but 3 of my diabetes life) I have worked for a diabetes organisation. It leaves me in a unique position that brings great opportunities and privilege, but also makes me feel like a complete outsider at times.
HCPs are confused by me and sometimes suspicious of my vocal advocacy on engagement and the power of peer support; others with diabetes are sometimes wary because they wonder just how free I am to be open and honest about my diabetes; within diabetes organisations I am seen as someone who has fingers in many, many pies; global advocates are curious about how I manage to write this blog while still being in paid employment with a diabetes organisation. To avoid confusion (frequently my own), I speak differently depending on the audiences I stand before, and adapt my tone and language and stories slightly to suit HCPs, PWDs, industry reps or government people.
But essentially the stories are all the same and it is my voice telling the stories.
Next week, I’ll be in Munich at the European Association for the Science of Diabetes (EASD) Annual meeting. The EASD conference is an interesting one. It is very ‘rats and mice-y’ – the term I use for conferences where I look confused in most of the sessions because I have pretty much no idea what is being said, however understand enough to know that someone, somewhere has managed to cure diabetes. In mice.
Despite it’s very science-focused content which attracts very science-focused folk, I feel very ‘right’ at this particular conference, because there is a wonderful advocate, blogger and consumer satellite program that means the city is full of ‘my people’. And that is why I am there – for those events.
If I feel as though I don’t belong at EASD, it’s because I am the only Australian advocate there. I have travelled the furthest distance, I am jet lagged for most of the time and people have trouble understanding my accent. But the Italian contingent at the advocate events claim me as one of their own (albeit one of their own who doesn’t speak the language), so at least I feel that I fit somewhere.
So at least for next week, I’ll know my place. And it will be alongside some of the most dynamic, clever, passionate and dedicated people I know. My people. They will teach me a lot as I learn what they’ve all been up to since we last met and I’ll clumsily share what’s been going on here in Australia. That’s where you will find me.
(And you’ll also find me sitting down the back of science-y sessions looking confused. And wishing I was a mouse.)
So many things on my radar at the moment. Here is just a taste!
Gila Monster and diabetes
Over the weekend, federal health minister, Sussan Ley announced the drug Bydureon would be listed on the PBS from 1 September 2016. Bydureon is a once-weekly injection used in conjunction with oral medications for people with type 2 diabetes.
Fun fact: Bydureon is the brand name for exenatide, which is a synthetic form of a substance found in the saliva of a lizard – the Gila Monster. (Please can we talk about how someone worked out that this would be a good treatment for diabetes?)
News from ACBRD
The team from the Australian Centre for Behavioural Research in Diabetes don’t sleep. At least, I am pretty sure they don’t. My office is on the same floor as them and I can tell you that I’ve never seen any of them asleep at their desk. Instead, they work really hard and produce things like these:
Centre Foundation Director, Professor Jane Speight, is straight talking at the best of times, and her commissioned article published on Monday in the Medical Journal of Australia pulls no punches in putting forward a strong case highlighting the need for behavioural innovation in the treatment of type 2 diabetes.
Dr Jessica Browne from the Centre has been leading work on diabetes and stigma, and this piece published recently in Diabetes Care is about the development of the Type 2 Diabetes Stigma Assessment Scale.
Over-achievers the lot of them. And how grateful I am! (If any of you are reading this, stop it now and get back to work!)
AADE / DSMA / diaTribe / Language
I cannot even begin to express how excited I was last week to see so much focus on and discussion about diabetes and language at last week’s American Association of Diabetes Educators conference.
I sat in my office in Melbourne last Friday morning in tears as on the other side of the world in San Diego (where it was Thursday evening) Cherise Shockley directed a tweet chat about language and diabetes. (And a huge thanks to Cherise for reaching out before the chat!)
In this piece from diaTribe, Kelly Close also wrote about language. Check out this BRILLIANT ‘Diabetes: Starting the Conversation’ infographic. I love this SO much!!
I am always on the lookout for diabetes blogs to read and share and this one is just brilliant! Molly Schreiber’s blog, And Then You’re at Jax, is about living with not only type 1 diabetes, but also rheumatoid arthritis. (Another one of us who collects autoimmune conditions…)
For beautiful, sensitive and honest writing, this is where it’s at! Check it out here.
ADS ADEA next week
Next week is the Australian Diabetes Society – Australian Diabetes Educators Association Annual Scientific Meeting on the Gold Coast. Program is live here.
I’ll be writing and tweeting from there for a couple of days next week. Keep an eye out on the #adsadea2016 hashtag to follow along!
New resources for young people from the NDSS
There is little more satisfying that seeing the end result of something that has taken a lot of effort, time and expertise. I am thrilled to show off these beautiful resources that have been produced out of the NDSS Young People with Diabetes Program that I manage as part of my day job.
They look beautiful (the graphic designer is an absolute gem!) but even more importantly, they are full of important and useful information
An online version of Mastering Diabetes can be found here.
And an online version of Moving On Up can be found here.
More about the inclusiveness of the DOC…
My post about the DOC from earlier in the week has generated a lot of really interesting and valuable comment, both on this blog, on Twitter and Facebook and with many messages sent to me privately. Thanks to everyone who has contributed and, mostly, thanks to everyone for being so positive and respectful in their comments.
The purpose for writing was to try to encourage a discussion about how and why some people feel more included than others. I know this is not the first time this has come up and I doubt it will be the last.
I have noticed some common themes in how people feel and am trying to write something about that, but keep feeling clumsy and inarticulate. I’ll keep trying and see if I can make sense of anything – mostly in my head!
Banjos, banjos, banjos
Last week I went to two concerts at the stunning Melbourne Recital Centre. Both showcased banjo players and both were brilliant. One of the concerts was TWO banjo players and nothing more. I don’t know who I am anymore…
But I can’t stop listening to this at work.