You are currently browsing the category archive for the ‘Health’ category.

I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

A few people read this blog. I actually checked the stats just before, and was surprised to see that each day a significant number of people check in and read what I have to say.

So, given that people seem interested in what I have to write, I’ve decided I should take advantage of this. With this profile, I am going to do good for the world.   

Just so you know – because I’m all about disclosure – I’m a classically trained flute player. Also, I like to cook. And I’m quite good at air hockey. Also, I write some mindless crap a few days each week and publish it here, so that OBVIOUSLY qualifies me as MORE than suitable to give advice – any sort of advice I’d like, but specifically medical and nutrition advice. In fact, I’d argue that I am probably more qualified than most people who have gone to medical school, because they have been brainwashed by all the evidence and peer-reviewed journals they’ve been forced to study. I haven’t.

I think that it’s fair for me to advise that insulin is actually really poisonous. It’s dangerous and it’s dodgy. Doctors, of course, won’t tell you this. They want to keep you on insulin because they are in the pocket of Big Pharma, and like their holiday houses on the Peninsula, so they won’t tell you what they know.  

Really, you should all be off insulin and use air and water, and maybe some cinnamon, which is NATURAL and can be found in NATURE and is ORGANIC. Because NATURE’S NATURAL ORGANICS are health care. Medicine (such as insulin) is sick care.

Also – if you are ingesting grains, dairy, fruit, vegetables, sugar, protein, carbs, caffeine, flowers, condiments, oils, sauces and/or food (except organic kale) and drink (except organic kale juice), you should stop. Dietitians know this, but they won’t tell you that because they are in the pocket of Big Food and they want you to be sick so you’ll go to doctors who are in the pocket of Big Pharma.  

It’s the circle of life and everyone everywhere is trying to keep you sick. Okay? OKAY?????

And, finally, I’ve seen the way and realise now that vaccines are really dangerous and I wish that I’d never vaccinated my kid and will be cancelling my flu vax appointment for early next month. I’m trying to work out if I can actually somehow withdraw the vaccines I had injected into my kid last week so she doesn’t have those evil pollutants floating around her otherwise perfect self. Vaccines are full of toxins and heavy metals and evil pixies. Plus, vaccines cause frizzy hair, skin tags and bugs to fly into your mouth making you cough. Doctors know this, but won’t tell you because … well, you know why…

Also: kale. Because KALE, KALE, KALE, KALE, KALE!! (Must be organic.) 

I know. I sound like a lunatic, right?

Actually, I sound kinda like Pete Evans. To be honest, I didn’t watch Pete Evans’ interview last night. I’m not interested in seeing him being allowed to spruik his dangerous crap on a television station that employs him (poor form, Channel 7), plus he’s full of shit. Most importantly, we were watching ‘Shut Up and Sing’ in preparation for seeing the Dixie Chicks next Saturday night and needed to bring the kidlet up to speed with her political education. #TeachingMoment

But I did catch up online with some of his rubbish claims and am once again flabbergasted that people actually believe what he has to say and defend his right to say it.

If Pete Evans said ‘You know, it’s always best to eat fresh, healthy, in-season foods and as a chef, I’m going to share some recipes that will show you how to make an easy and healthy dinner’, I’d be ALL over it. I’d love that! I’d make his recipes and then Instagram the shit out of them. Because I care and share.

But that’s not what Pete Evans does. Pete Evans tells you that fluoride is bad and that babies should be fed bone broth and drink camel’s milk and that sunscreen is pointless. He blunders about in a way that is oddly (and frighteningly) similar to fools including Donald Trump and Pauline Hanson who seem to think that just because they have a public profile, they are qualified to give health advice.

And people believe their claims and then blindly follow them.

I (somewhat stupidly) had a look at Pete Evans’ Facebook page today and found this:

I’m not here to debate whether any people are taking medicines they maybe don’t need to take. I’ve no qualifications in health (real or imagined) and it’s not my place.

But this sort of meme is really damaging because it lacks any sophistication at all. It suggests that if a doctor puts you on any drug, they do not have your best interests at heart.

Could our HCPs be more holistic about the way they treat us? Maybe. Do some doctors over- and unnecessarily – prescribe drugs? Possibly. Do ALL doctors do this? Absolutely not. Most doctors – the vast majority, in fact – do not prescribe drugs that people don’t need. (I’ll just let the conspiracy theorists make their ‘ALL DOCTORS ARE IN THE POCKETS OF BIG PHARMA claims for a bit…Done? Okay, let’s move on.)

And, of course, I’m not stupid, and I know that when Evans puts up a meme like this on his Facebook page, he’s not really about people like me who need insulin to stay alive.

But the problem is that not everyone realises that.

Just last week, we heard another case of a child dying after his parents took him off insulin to treat his diabetes using ‘natural methods’. I still have people telling me to try <insert ridiculous and pointless herb> to treat my diabetes. There will always be people who just need a tiny push to stop the drugs they’ve been prescribed, because meds are bad, right? And natural is good, right? No. Not right.

Evans (and his ilk) speak in generalisations and sound bites that make sense to some people. But he fails to in any way address the intricacies of health. And he certainly has no concept of the complexities of living with a chronic health condition and how the drugs we take HELP keep us well (and alive).

This could be because he is a chef and doesn’t need to. And if he stayed being a chef and shut the fuck up about health, I wouldn’t be writing this blog post. Or getting into online arguments with members of his ‘tribe’ who keep offering me unsolicited and wrong medical advice*.

*Also – note to self: You are a fool for voluntarily falling down the rabbit hole and engaging with conspiracy theorists!

I’m a sucker for a man with a beard. So when Jimmy Niggles was introduced as the second speaker at last weekend’s HealtheVoicesAU conference, I snapped to attention to hear what he had to say.


Jimmy Niggles (not his real name) started Beard Season at the wake of his 26-year-old mate, Wes, who died of melanoma. Each year, 46,000 people lose their life to melanoma making it one of the most lethal cancers globally.

Jimmy wanted to do something to encourage people to have regular skin checks, because (as is often the case) early detection of melanoma is critical to survival. The idea was for blokes to grow a beard in Winter (apparently the season for beards!) and then use their hirsuteness to start a conversation and challenge their friends and family to have a skin check.

One of the great things about this charity is that any bloke can become an ambassador. Grow a beard. Start a conversation. Encourage people to have a skin check. It’s simple, scalable and easily translatable. (And there is something on their website here about how women can get involved too.)

Jimmy is a reluctant advocate in some ways. He says he made himself an expert speaker by starting with one on one conversations, with the belief that every conversation can make a difference. That grass roots approach has grown to him (and his beard) being the face and voice of Beard Season and he has really kicked some major goals!

It was easy to draw parallels between what Jimmy is doing with Beard Season and how it could be adopted for diabetes awareness – both in terms of screening for type 2 diabetes and also complications screening. Those conversations at an individual level have so much potential, and tied together with public health campaigns and media promotions, there is an opportunity to reach lots of people.

Jimmy’s beard is there permanently for now and will be until someone offers him a cool million bucks to shave it off. He’s open to offers, so if you have a spare million under the mattress or in the freezer, he’ll put it to good use.

Want to do something to support Beard Season RIGHT NOW? Check out these beyond fabulous playing cards with some incredibly impressive beards. Be still my beating heart! Each deck of cards contains a lucky card. The idea is that you read the card, do as it says and spread the word. It’s another simple and effective way of getting the word out.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

 

Last Friday, I flew to Sydney to take part in the first Australia HealtheVoices Conference coordinated and run by Janssen (disclosure at the end of this post).

I’d followed along the US versions of this event, which have been running now for a couple of years, always with diabetes health advocates attending. So I was thrilled when I received an invitation to take part.

The event was run on Saturday with a dinner on Friday evening featuring Turia Pitt as the keynote speaker. I’m going to write something about that another time. Today I want to focus on some of the actual conference. This is just the first post – the rest will come over the next week or so.

I was extraordinarily excited about being in a room with advocates from outside the diabetes space. (But also pleased for the safety of the diabetes advocate bubble! We were well represented – four of us seated at the same table, occasionally nodding at each other as we recognised the stories others were sharing, even if their health condition was different to the one we navigate.)

Anytime I am surrounded by health advocates (diabetes and other) I have a weird contraction of feelings: surprise and absolute no surprise. Surprise that experiences are so similar and yet absolutely no surprise that our experiences are different! I read this article from the SMH (written as a follow up to the event) and so much resonated about Luke Escombe’s story, despite his peers not living with diabetes.

The speakers at the conference were diverse and covered a lot of different issues. And holding it all together was journalist and TV presenter Shelly Horton, whose fabulousness I cannot even start to describe! As well as making sure everything ran to time, Shelly shared stories of her own health experiences of living with PCOS.

HealtheVoices emcee, Shelly Horton, hamming it up with some diabetes advocates.

We started with Samantha Jockel from Aldi Mum. She was a terrific speaker, however I found that not everything she said sat easily with me, mostly because at times I struggled to see the parallels between what I do (write a rambling little blog about about my own experiences of my health condition) and what Sam is doing (building a community which generates income).

I also realised I’m a crap blogger! As Sam eschewed the benefits of knowing your analytics and stats – she is an analytics ninja! – I realised that I rarely if ever look at the stats on my blog or other social accounts. Facebook sends me a weekly roundup and I categorically ignore the email; Twitter wants me to check the activity of different tweets, but I don’t; Facebook also tells me when I a post is doing better than usual and I get annoyed at the alert thinking that it was someone posting a cute cat meme: LinkedIn tells me how many people are looking at my profile, urging me to go and see who they are, but I’m seldom interested.

I know these are tools that can help me grow my audience and build my following, but I still have this idea that the only people reading are my mum and the guy from Romania who used to message me every day. (Perhaps if I looked at my stats, I’d know that’s not the case…)

Sam also spoke about boosting posts and ‘throwing some money’ at them if they could do better. I’ve never spent a cent on promotion of my blog and can’t see that I ever will. Once I hit publish and share what I have written on my social feeds, I don’t do anything any further. Occasionally I repost the link on Twitter, but only when I remember that there are people living in different hemispheres and were probably asleep when I posted it the first time so may have not seen it.

I guess the difference for me personally is this: My blog is not my job. I make no money from it and I have no intention of it ever becoming a money maker for me. I have a job – this is not it, despite the significant time and energy I spend writing. I blog for very selfish reasons – to find my tribe!

But there was much that did resonate with Sam’s talk and the overarching message that I took away was this: be authentic. As she spoke about the importance of finding our own voice online, she kept coming back to the need to be relatable, honest and real.

That did make sense to me, because I know that the only reason that I write is to tell my story about living with diabetes – the good, the bad, the ugly, the real.  I know that when I read about people living with diabetes, I want to read the genuine experience. The blogs I read – and keep going back to – are the ones that are undoubtedly honest and authentic.  Real life. Real stories. Real people.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

This just came up in my Instagram feed:

(Click for source.)

I wasn’t sure whether it was hilarious or painfully true. Probably both, actually.

Health care is complicated and anyone who thinks otherwise (or has no idea just how complicated it is) has either never needed to use it and / or is a fool. And as confusing and complicated the system is here in Australia, I am so grateful that we are not in the terrifying situation is facing our diabetes friends in the US at the moment.

There are a lot of very impressive advocacy initiatives going on. I’ve been keeping a close eye on March for Health which you can read about here via their Facebook page.

I’m Sydney-bound for the Janssen HealtheVoices Conference. Janssen has run similar events in the US for a number of years now and I’m thrilled to be one of the online health advocates attending first Aussie version. There will be a number of diabetes advocates attending, but this is about far more than diabetes. You can follow along by checking out the hashtag #HealtheVoicesAU

Happy International Women’s Day!

This year, more than ever, it feels like we need this day. In fact, sometimes, it seems that the world is not a great place for women and that rather than advancing and continuing in our quest for equality, we are actually going backwards.

When we have governments – usually led by men – still thinking that they have a say with what women do to and with our bodies, making decisions about, and placing restrictions on our reproductive options and confusing health reform with the limiting of choices, we know that we’re not even close to things being fair for women.

My world is very shaped by women. Exhibit A: just a few of the women and girls who I’m lucky enough to call friends, family and colleagues, many of whom I’ve met through my diabetes life.

Exhibit A

But for me, International Women’s Day is about far more than my own world.

This year, the International Diabetes Federation has decided that the theme for November’s World Diabetes Day will be Women and Diabetes. In an effort to draw attention to the specific challenges faced by women with diabetes across the globe, the IDF will develop a range of materials to support women. There will be an entire stream at the IDF Congress in Abu Dhabi at the end of this year dedicated to women and children’s health.

Currently, there are almost 200 million women across the world living with diabetes and 40% of them are of reproductive age. That is a lot of pregnancies potentially impacted by diabetes. The need for safe, evidence-based, pre-pregnancy care for women with pre-existing diabetes is essential to improve outcomes for women and their babies.  And this needs to start early. With half of cases of hyperglycaemia in pregnancy occurring in women under 30 years, girls and young women with diabetes need to have access to education and information about the importance of pregnancy planning.

Women’s health and diabetes has always been a special interest area of mine. My first big project when I started working in diabetes organisations was to help develop a diabetes and pregnancy booklet.

But pregnancy is not the only health issue for women with diabetes. There are a lot of other concerns and issues that need to be addressed, and I am looking forward to what the IDF do later in the year.

So today I’m celebrating – and saluting – women around the world – especially my own daughter who sent me a clip of the women teachers from her school performing ‘I am Woman’. And checking out some really important women’s health-related sites (some links below). Go get your green, purple and white on and celebrate the day! 

Diabetes Sisters is a fabulous organisation based in the US and run by two of the women who appear in the collage above. It’s led by Anna Norton (CEO) and Sarah Mart (Director of Operations) who are exactly the kind of women you want on your team. I’m lucky to call them friends.

T1 International has this piece about the Sonia Nabeta Foundation.  

And, today is the perfect day to do the The Jean Hailes annual Women’s Health Survey and help shape women’s health in Australia.

In the next couple of weeks, our kid gets to line up for her next round of immunisations. At twelve years of age, that means that she can look forward to chickenpox and Diphtheria-Tetanus-Pertussis boosters, and a three-dose course of the HPV vaccine.

When the consent form was sent home, she begrudgingly pulled it out of her school bag and handed it to me. ‘I have to be immunised,’ she said employing the same facial expressions reserved for Brussels sprouts.

She took one look at me and then, slightly sheepishly, said, ‘I don’t get to complain about it, do I?’

Nope,’ I said to her. ‘You don’t get to complain about needles because…well because…suck it up princess. No sympathy about needles from your mean mamma! And you have to be vaccinated because that’s what we do. Immunisation is safe and is a really good way to stop the spread of infectious diseases that not too long ago people died from. And herd immunity only works if…

‘….if most people are immunised so diseases are not spread,’ she cut me off, finishing my sentence. I nodded at her proudly, signed the form and handed it back to her. ‘In your bag. Be grateful that you are being vaccinated. It’s a gift.’ (She mumbled something about it being a crappy gift, and that it would be better if she got a Readings gift voucher instead, but I ignored that.)

Over the weekend, the vaccination debate was fired up again with One Nation idiot leader, Pauline Hanson, sharing her half-brained thoughts on the issue.

I hate that I am even writing about Pauling Hanson. I despise what she stands for. Her unenlightened, racist, xenophobic, mean, ill-informed rhetoric, which is somehow interpreted as ‘she just says what many of us are thinking’, is disgusting. But her latest remarks go to show, once again, what an ignorant and dangerous fool she is.

Her comments coincided with a discussion on a type 1 diabetes Facebook page about vaccinations preceding T1D. Thankfully, smart people reminded anyone suggesting that their diabetes was a direct result of a recent vaccination that correlation does not equal causation.

I get really anxious when there is discussion about vaccinations, because the idea that this is something that can and should be debated is dangerous. There is no evidence to suggest that vaccines cause diabetes (or autism or anything else). There is, however, a lot of evidence to show that they do a shed-load of good. And if you don’t believe me, ask yourself how many cases of polio you’ve seen lately. People of my parents’ generation seemed to all know kids and adults with polio and talk about just how debilitating a condition it was. And they know first-hand of children who died of diseases such as measles or whooping cough.

This is not an ‘I have my opinion, you have yours. Let’s agree to disagree’ issue. It is, in fact, very black and white.

A number of people in the Facebook conversation commented that their (or their child’s) diagnosis coincided with a recent vaccination. But here’s the thing: type 1 diabetes doesn’t just happen. We know that it is a long and slow process.

 

Click for reference.

What this shows is that even if onset of diabetes occurs at (correlates with) the time of a vaccination, it cannot possibly be the cause.

When we have people in the public sphere coming out and saying irresponsible things about vaccinations, it is damaging. People will listen to Pauline Hanson rather than listen to a doctor or a researcher with decades of experience, mountains of evidence and bucket-loads (technical term) of science to support their position.

The idea that ‘everyone should do their own research’ is flawed because there is far too much pseudo-science rubbish out there and sometimes it’s hard to work out what is a relevant and respectable source and what is gobbledygook (highly technical term).

Plus, those trying to refute the benefit of vaccinations employ the age-old tactic of conspiracy theories to have people who are not particularly well informed to start to question real experts. If you have ever heard anyone suggesting: government is in the pockets of Big Pharma / the aliens are controlling us / if we just ate well and danced in the sunshine / any other hare-brained suggestion, run – don’t walk – away from them. And don’t look back.

I have been thinking about this a lot in the last couple of days. I have what I describe as an irrational fear that my kid is going to develop diabetes. It keeps me awake at night, makes me burst into tears at time and scares me like nothing else. If I, for a second, thought for just a tiny second that vaccinating my daughter increased her chances of developing diabetes, she would be unvaccinated. If I thought there was any truth at all in the rubbish that vaccines cause diabetes, I wouldn’t have let her anywhere near a vaccination needle.

But there is no evidence to support that. None at all.

The ATTD conference is, by its nature, very technology-centric. This is absolutely not a negative; in fact, it was one of the reasons that I had always wanted to attend because I am such a DTech junkie.

However, as it turns out, it wasn’t the promise of hearing about, or seeing, the latest devices that had me most excited as I perused the program, setting out my schedule for my busy days in Paris.

No, it was this session on the afternoon of the Thursday that really piqued my interest:


I knew we were off to a good start when session co-chair and first speaker, Dr Lori Laffel, flashed this slide up, announcing ‘Diabetes is Stressful’.


Sometimes, there is an assumption that diabetes technology automatically reduces stress. To a degree – and for some – that may be true. For me, the thought of wearing CGM all the time reduces the stress of not being aware of hypos. But it also adds stress with the never-ending, pervasive data data-feed.

There was also this dichotomy that so many of us face:

 

Acknowledgement of the terminology we use was a welcome addition to this talk. I think that at times our expectations are not being particularly well managed with the way technology is named.

Expectations were covered again when Dr Kath Barnard took the stage.


I love that Kath discussed the responsibilities of health psychology researchers when it comes to improving the outcomes of tech. She mentioned the importance of developing and using device-specific measures to assess psychosocial impacts on both people with diabetes as well as their carers. Most important was the point of ensuring robust and consistent psychological assessments in clinical trials to better understand participant experiences. This often seems to be a missing component when it comes to researching technology.

This is a recurring theme from Kath: that the juggernaut of diabetes technology advances needs to stop being only about button pushing and changes to clinical outcomes if their full potential is to be realised.

It’s important to note Kath is not anti-tech – in fact she frequently acknowledged the ground-breaking nature and significant potential of diabetes technologies. But her dedication to individualising technology use for each person with diabetes is her over-riding message.

Overall, the take-home from this whole session was this comment from Kath, which became a mantra for me for the remainder of the meeting: kathbarnard

Next up, Dr Andrea Scraramuzza from Italy explored the human factor in technology in paediatric diabetes, however his talk was relevant to adults too. Human Factor brings together information from psychology, education, engineering and design to focus on the individual and their interaction with products, technology and their environments with the aim of better understanding the connection between human and technology.

I really loved this presentation because it brought home the idea that it doesn’t matter how whiz-bang the tech is, if the education is not right, if human limitations are not considered and if people with diabetes are not willing to learn – or clinicians are not willing to teach – the potential of that tech will never be reached.

The session closed with the always brilliant Professor Stephanie Amiel who spoke about hypoglycaemia – specifically, where to go when the technology hasn’t worked. I thought this was a really sensible way to round out the session because it reminded us all that technology is never a silver bullet that will fix all situations. Sometimes, we need to revert to other ideas (possibly alongside the technology) to search for solutions.

I was really grateful for this session at the conference. All too often psychology is ignored when we talk and think tech. The focus is on advances – and the speed of these advances – all of which are, of course, super important.

But it is undeniable that alongside currently available and still-in-development technology is the fact that there is a very personal aspect to it all. Whether it be considerations of actually attaching the tech to our bodies (unfortunately this wasn’t really discussed) or tech fatigue and burnout, or simply not wanting to use the tech, this is the side of diabetes and technology that needs to be researched and understood because how we feel about using the tech absolutely impacts on the results we get from it.

Well done to Professor Tadej Battelino and the ATTD organising committee for including this session in the ATTD program. It really was most useful and hopefully the HCPs and researchers in the room walked out thinking a little differently. I know that there were a lot of advocates in the room who really appreciated the session – because we always are thinking about this side of diabetes!

I do, however, have a challenge for the organising committee. As excellent as this session was, it could have been even better if they had dedicated some of it to hearing from people with diabetes talk about this issues being discussed by the clinicians and researchers. That would have really brought home the message. Perhaps next year…?

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I have shared my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

Paris was, as always, wonderful. The mild weather, meant it was lovely to walk everywhere. With only three and a half days in one of my favourite cities, I was grateful for the daily 40-minute stroll from the hotel near the Eiffel Tower via the Trocadero to the conference centre so that I at least get to see some of the city.

Even early morning meetings were bearable with views like these. (Hashtag: not photoshopped!)

Sunrise behind the Eiffel Tower.

On my first full day in the city, I attended an event hosted by Roche (all my disclosures are at the end of yesterday’s and today’s posts, as always). The Blogger #DiabetesMeetUp brought together almost 40 bloggers from across Europe. And me.

The day’s activities were a continuation of their event at EASD last year (read about that here), although attendance was expanded to also include a contingent of fabulous women from Italy. It was actually the fourth #DiabetesMeetUp event hosted by Roche with many of the attendees having been to all of them. (There was a comment when I tweeted a photo of the day that the group didn’t look particularly diverse. I’m flagging that here because I acknowledge the privilege in the room. I do think that it is important to ask how better representation can be achieved. The flip side is that the event targets bloggers, so there is already a bias for well-connected and informed people. I have no answers….)  

Just some of the bloggers…

The day was busy and very interesting. I have been an extremely vocal critic of device companies failing to engage with consumers in the early stages of device and software development. It frustrates me no end when I hear of the limited and barely tokenistic engagement undertaken by device companies so Roche’s approach is truly a breath of fresh air.

It was also pleasing that while some of the day was dedicated to showcasing product, there was a lot more than that on the agenda. Plus, all product presentations were an opportunity for the bloggers to provide feedback, plus there was plenty of frank discussion from both attendees and Roche staff.

So, what devices where on show? There was some more about the Roche Insight CGM, mostly about the app that is being developed to accompany the device. When this was discussed at the EASD #Diabetes Meetup last year, there were many suggestions and recommendations about how to improve the app platform. It was utterly brilliant to see a lot of those changes integrated in the new design. Obviously it’s a lot easier to make changes to software rather than hardware, but still this focus on gathering feedback and then making the changes is commendable.

One of the most exciting aspects of the discussion for me was the discussion around the Insight systems alarms, specifically the language being used. Some of the words and phrases were flagged as not being quite right, and there was an opportunity to wordsmith just what language would be used. For example, the term being used was ‘warning system’ and I questioned if that was really the best word available. I think of ‘warnings’ as something connected to inclement weather or danger on the roads, not really ideal when thinking about data I use to help manage a health condition each and every day.

Talking language. It was hard to get the microphone away from me.

The customisation of this system is outstanding. Other than the super-low (safety) alarm, all others are fully customisable, can can be activated for certain times of the day, use different sounds for different alarms for different times and the user can build up to ten daily profiles. The objective for such thorough customisation is to work towards reducing alarm fatigue as well as create a more flexible, individualised and intelligent alarm system

As yet, there is still no integration with the Insight CGM and the Insight pump – a criticism and recommendation from the group back at EASD last year, however I believe this is on the radar. Undoubtedly, the feedback from the group was that this is essential, so I hope that the Roche team find a way to make it happen!

The other product that was (very briefly) discussed was the Senseonics Eversense system – a ninety day implantable CGM sensor and data management system. This tech is currently in trial stage and more information can be found here.

Roche gave all the Blogger #DiabetesMeetUp attendees a press pass to ATTD which meant that throughout the remainder of the conference, there was a significant consumer contingent roaming the halls and sitting in sessions. Considering that this is a group of highly connected, tech-savvy and smart individuals, it was terrific that there was the opportunity to be part of the conference amongst the health professionals.

I’m really grateful to have been offered the opportunity to attend the day – a very big thank you to Ute and the team from Roche for extending an invitation to me (I promise, I am not always the jet lagged mess you see at these events!) and for your ongoing commitment to engaging the community. As well as participating in the agenda set by Roche, I was able to speak to some amazing and activists who each day are advocating for people with diabetes in their own countries. The level or excitement and commitment to what they do simply never wanes.

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

Last Friday night, I was at a work dinner. The event followed a very full day of meetings and as we sat down for our meal, I was concerned that my brain was so drained I wouldn’t be able to focus on the guest speaker.

However, when he started, the speaker (one of Australia’s leading diabetes health professional experts) gave an eloquent and articulate talk about the state of diabetes in Australia and the world.

He spoke for a relatively short time – about 15 minutes – and then sat back, continuing to chat with other people seated around him.

He noticed my CGM on my arm, but didn’t say anything. However, later on as he was speaking about realities of living with diabetes, he stopped and said directly to me: ‘You know this better than anyone else. Why am I talking?’

I was grateful for the acknowledgement, but I did want to hear more from him. One of the things he focussed on in his talk was about how HCPs often don’t truly understand diabetes or how to speak to people with diabetes. He identified stigma as a real issue for people living with diabetes – and how the way diabetes is presented and spoken about in the media is damaging. But several times, he came back to his concerns about healthcare professionals and their approach to dealing with people with diabetes.

‘You are so right,’ I said, agreeing with him. ‘I’ve found – and have heard from many others – that often HCPs don’t get diabetes at all. There is this weird concept that diabetes is a matter of insulin (or other meds) – food – check BGL – adjust accordingly. And go! It’s not that easy. It’s really not.’

He nodded at me. ‘You know; I think we made a really big mistake about 30 years ago when we started saying that people with diabetes can live a normal life…It’s not true.’

I’ve not been able to stop thinking about that comment all weekend. It was startling to hear the words, but I think that was because I realised straight away that it was true.

When I was diagnosed, I was told that diabetes would not prohibit me from living a normal life. Sixteen years ago when I started using a pump, I was told that it would make me feel normal again. When I started on CGM, I was told that I would feel normal when I could easily see and adjust my glucose levels. When I’ve started any sort of new eating plan, I’ve done it because I’ve heard that it makes people feel more normal.

I spend so much time convincing people – convincing MYSELF – that diabetes hasn’t prevented me from living a normal life. I check off on my fingers the things I’ve done, one at a time proving that I can do anything, I have done everything. I am normal!  Look!! I work; I travel; I have a kid; I eat what I want; I stand up in front of people and talk; I write and get published. Look how normal my life is!

But the truth is – it’s not normal. My life is not normal. And it’s disingenuous to suggest otherwise.

It’s not normal to for my body to not produce insulin. It’s not normal to have to think about every piece of food I put in my mouth, (how many carbs are in there? Are there too many? Are there not enough? What is my BGL right now and do I need more/fewer carbs?) It’s not normal to be terrified that I am going to develop complications that will be debilitating, limiting, scary. It’s not normal to be so worried about my health all the time – to be so focused on my health all the time. It’s not normal to have sensors and pumps and devices stuck to my body as I try to mimic a human organ. And it’s not normal to think this is normal

Humans are incredibly adaptable. We modify and make changes to suit to new environments, circumstances, challenges.

And when we are diagnosed with a chronic health condition that impacts on pretty much every part of our life, we adapt. It may become our new normal. But it’s not normal.

I agree with the esteemed professor from the other night. It was a huge error to start saying that we can live a normal life with diabetes. It undermines, and negates, the constant effort we need to put in to appear normal and to be healthy; it makes us feel guilty – and incompetent – when diabetes does stand in the way. It makes us fell less than we should when we need to seek special consideration or dispensation to help manage situations.

I have diabetes. My life is not normal. And it doesn’t diminish me in any way to admit that.

P.S. Tomorrow is Valentine's Day and time to donate to the Spare a Rose Campaign so you can Save a Child. Click on the pretty flower.

P.S. Tomorrow is Valentine’s Day and time to donate to the Spare a Rose Campaign so you can Save a Child. Click on the pretty flower.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Enter your email address to follow this blog and receive notifications of new posts by email.

Twitter Updates

Archives

Follow Diabetogenic on WordPress.com

Diabetogenic on Facebook

%d bloggers like this: