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One of my favourite memes on social media is the response to people who tell the world they’re taking a break from or leaving social media groups or platforms: ‘This is not an airport. There is no need to announce departures.’ (Aussie airports at the moment are full of cancelled flights, so departure announcements seem to be few and far between, but I digress.)
And so, I didn’t announce that I was taking a little break from the online world. It wasn’t really planned. But it has coincided with a couple of weeks break from work and it’s been nice to step away a little and just be. Plus, it’s given me a lot of time to write and write and write and smash deadlines for some of the freelance work I never seem to have enough time to get done. (My submission emails inevitably start with ‘I’m so sorry for the delay in getting this to you…’) But here on Diabetogenic, I’m the editor, so delays are only holding me up and it would be weird to apologise to myself for repeatedly missing deadlines, especially when I don’t even have deadlines (mostly because I don’t set them because I know I’d never meet them) and there I go digressing again and is it any wonder I get nothing done?!
Having said that, I’ve received dozens of emails from people asking when to expect a new post, so to everyone who has messaged or wondered: ‘I’m so sorry for the delay in getting this to you…’.
But here I am back again, with a heap of great things I’ve seen recently and I want to share them here in a bit of an interweb jumble!
I’m writing
Yes, I know it’s weird to share my own writing on my own blog, but whatever! Plus,, there is nothing wrong with a bit of self-promotion. I’m back writing for diaTribe and absolutely delighted to have had these two pieces published recently.
This one is about how it’s important to tell stories of people with diabetes who choose to not run marathons or climb mountains in amongst stories of those who do.
And this one is about a new type 1 diabetes screening program for Australian children. I write about the reservations I had about having my daughter screened when she was little, but how things might be very different with research like this. The response to this article has been lovely and a lot of parents with diabetes have reached out to say that they have had similar concerns and feelings to those I articulate in the post.
Advocacy through art
I’m a huge fan of Jenna Cantamessa’s artwork, and this beautiful image and accompanying post is one of the reasons why! Click on the artwork to be taken to the TypeOneVibes Instagram account to read Jenna’s words.
Stripped Supply
I’m always happy to promote smart women doing smart things and so let me introduce you to Ashley from Stripped Safely. Here we are at the recent Australian Diabetes Congress.
When Ashley’s boyfriend was diagnosed with type 1 diabetes, she realised there was a gap in the market when it comes to mail ordering NDSS supplies. Remember the old days when we used to be able to easily place an order online and have our pump lines or BGL strips delivered straight to our front door? Well, Ashley is making that happen again. It’s a subscription service and is super easy to use. Details about how to use Stripped Supply here.
Gong
You bet I’m proud to share this! Diabetes Australia’s Heads Up on Diabetes campaign recently received an award from the Australian Patients Association. The campaign was recognised as the Best Patients’ Campaign and how wonderful that shining a spotlight on diabetes and mental in such a powerful way has been awarded.
I’ll just say that while it is truly amazing to be acknowledged in this way, the real measure for me of the success of a campaign is how the diabetes community responds and it was clear from year one of this three-year campaign that people with diabetes from across the world absolutely loved it, as evidenced by the number of times the campaign videos were shared online. Oh, and there’s something quite incredible about sitting in a conference room and seeing our work played back to us by someone from outside the organisation. Yeah – that’s happened a number of times!
The Human Trial
So much buzz in the diabetes world at the moment about the incredible documentary out of the US, The Human Trial. Until 9 September, you can stream the film for free by going to this link. You will be prompted to make a donation if you can. All funds raised go to diabetes research.
More about this documentary soon.
Advocacy through poetry 1
At the recent Australian Diabetes Congress, I had the honour and pleasure of chairing a session with an brilliant array of diabetes advocates from Australia and across the world. One of the speakers was Ash Byrne who began her presentation with an incredibly powerful poem and then went on to speak about the mental health burdens of diabetes. You can see Ash readying her poem, Invisible, at this Facebook link.
Advocacy through poetry 2
Aussie diabetes advocate and #dedoc° voice, Leon Tribe shared this poem on Twitter earlier this week which beautifully explains the power of language and communication between people with diabetes and our healthcare professionals. (You may need to click on the image to read the poem more easily.)
Stigma – diabetes and beyond
‘I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.’
This is the start of a powerful post from Dana Lewis where she shares how the stigma that comes with diabetes has influenced how she feels about being diagnosed with another autoimmune disease. Read it here.
TEDx does diabetes advocacy
I’ve been a long-time fan of Grainne Flynn’s advocacy work and have shared her posts here before. Recently, she did a TED Talk about grassroots advocacy. It is all shades of brilliant and an absolute joy to watch. So… watch!
#dedoc° is busy!
There is a lot going on in the world of #dedoc°! Here’s just a taste of upcoming events that everyone can get involved in. Plus, the #dedoc° voices program will be kicking off again later this month at EASD with a cohort of new voices and alumni on the ground in Stockholm as well as following along virtually.
I’m so excited to be part of the #dedoc° symposium at EASD! Delivering a community led and focused symposium as part of the scientific program at a professional is a Big.Deal. We’re continuing to live and breathe #NothingAboutUsWithoutUs in the most impressive ways!
Disclosures
As always, I am thrilled to share things that I’ve found interesting, but disclosures are important. I’ve not been asked to share anything you see here, but figure if I find something interesting (or feel like doing same shameless self-promotion) you might too. I also figure that being transparent is important as is reminding you to consider my bias when sharing things.
- I am a paid contributor to diaTribe
- I am the Head of Communities & International Affairs at Diabetes Australia
- I am the Global Head of Advocacy at #dedoc°
Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.
Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.
Diabetes Chat
YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well.
It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world.
Search #DiabetesChat on Twitter for more.
dStigmatize
The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here.
I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times.
Seasons of…diagnosis
New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.
And a discussion on Twitter about it here.
HypoRESOLVE podcast
The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)
Here is the most recent episode (on Spotify).
Better engagement with PWD = better services
Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery.
One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion.
And the DDA podcast…
The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.
Language Matters for Portuguese speaking friends with diabetes!
The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes.
Thinking of starting on an insulin pump?
If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.
Who doesn’t want to come to ATTD!?
#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here.
(Disclosure: I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.)
World Health Organisation
In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here.
Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey)
Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!
A diabetes sea shanty…
You’re welcome.
(Follow @TypeWonDiabetes on Instagram here.)
People with diabetes and their involvement in research
An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!).
Spare a Rose – last push
February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program.
Here’s some stuff I’ve seen in the diabetes online world that I think is pretty cool. And I also think you might like it too if you’ve missed it.
If nothing else, this serves as a reminder that there are some super talented, smart, funny, productive, and downright awesome folks who are doing some super brilliant things and I am always happy to share that around. (I’m forever grateful when others in the DOC have shared my posts and other work. Building each other up is always a lovely thing to do!)
Vaccine in Australia (finally)
We may be a little behind the curve, but Australia’s COVID-19 vaccine rollout has finally started! Some links that might be useful to folks with diabetes:
- THIS statement from Diabetes Australia (disclaimer: I work there), the Australian Diabetes Society and the Australian Diabetes Educators Association
- THIS piece from Diabetes Mine
- THIS eligibility calculator from the Australian Government which will give you an idea of when you can expect to get your jab.
And THIS message from me (and science):
Diabetes poetry to make you laugh and cry
Kerri Sparling has just released her book of diabetes poetry. It’s called Rage Bolus and it is all shades of wonderful. It’s a gorgeous collection of words that will have you nodding, laughing (chortling) and crying, and is a must on the shelves of all folks with diabetes.
You can get your own copy here.
A new diabetes podcast to check out
Chelcie Rice has been around the DOC for a long time now and frequently provides thoughtful commentary on what’s going on in the diabetes world. And so, I’m thrilled to see that he has just launched a new podcast, ‘The Soul of Diabetes’.
The launch episode can be heard here, and then you should subscribe!
Also, Chelcie shared a video of his thoughts on the recent Dexcom Superbowl advertisement and it’s definitely worth a look.
Clare Diabetes Group meeting
More than a little honoured to have been invited to speak at the upcoming meeting of the Clare Diabetes Group in Ireland. You can register here.
Not an easy read…
Phyllisa Deroze remains one of the most incredible voices in the diabetes community. I have been lucky enough to hear her speak (she is such an engaging speaker!), and read everything she writes because I know it will get me thinking. On Valentine’s Day she wrote about her diagnosis story, which is not an easy read, but it is a very important one.
Phyllisa’s blog is called ‘Diagnosed Not Defeated’ and I don’t think that has ever been more accurate or relevant than in this post. Read it here.
CORONADO Study
Just today DiabTribe has published this great piece breaking down the findings from the latest findings of the CORONADO Study which looks at people with diabetes hospitalised with COVID-19 in a number of centres across France.
Read their article here (and there is a link to the full study there).
Totally not relative to anything diabetes wise, but why?
I’m just going to leave this here…
Can you see it??
Check out this advertisement from Bonds Australia for a bit of diabetes technology on show! A little representation can go a long way! (You’ll have to watch carefully…but check out the 36/37 second mark.)
Keep wearing a mask…
…because the science says they work. And share this with anyone without diabetes who is complaining about just how inconvenient it is to have to carry around a bit of fabric with them when they head out to the supermarket!
Spare a Rose final push
And finally, February is dwindling and that means that the 2021 Spare a Rose campaign is coming to its end. So far, an amazing USD$40,000 has come in from the community – that is, donations from people with diabetes and others affected by or associated with diabetes. There will also be corporate donations added to the final tally.
If you’ve not yet donated, or even if you have and would like to donate again, there is still time to make your contribution count towards the final tally. Every single donation makes a difference to the life of a child with diabetes.
My email autoreply is on and I have a glorious four weeks of holidays to look forward to. The last time I took any time off was back in January when my family travelled to NYC. There is no travelling this year. We have a new, beautifully landscaped back garden to camp out in over the next month instead. (By ‘camp out’ I mean sit comfortably on a sun lounger and drink Pimm’s.)
My plans are simple – do as little as possible. I’ve rallied against taking any time off this year because I’ve not seen the point. Why would I take time off to simply stay within the walls that I’ve stayed within for most of the year?
That was a mistake. I should have taken some time off. I should have stepped away from the computer and from work – even if it were just for a couple of days.
And so, I’m going to truly try to log off, to not stare at my computer, or open my laptop to just write a quick thing, revise something I’ve been working on, message a friend. I’m going to remove SoMe apps from my phone so that it’s not all that simple to quickly check for an update of what is going on in the Twitterverse or the world of Facebook and Instagram.
I wanted to finish the year on a positive by highlighting some of the people who have made the DOC truly remarkable. So, this is a little Interweb Jumble of the folks in the DOC who have made the place safe, happy and continue to truly be about community. Check them out if you already don’t. Expanding your view of the DOC is important if you want to learn about more than just your part of the world.
Cherise Shockley has a new podcast…
…and you should subscribe! It’s called ‘Don’t Keep it to Yourself’ and it’s my favourite new diabetes podcast which is completely not about diabetes! Instead, Cherise is pushing people outside their comfort zones and asking them to share things that others may not know about them. I’ve loved hearing the episodes she’s already shared and had an absolute ball chatting with her.
The thing about Cherise is that she IS community. Even though her podcast is not about diabetes, it is still about people supporting and looking out for each other. Because that is who this woman is! Subscribe and listen from wherever you subscribe and listen to podcasts.
DOC friends who have made me uncomfortable – but in a good way.
First up is wonderful Steffi from Pep Me Up whose Instagram stories challenged me to look at what was going on in the world in different ways. She has been absolutely relentless in her efforts to elevate the stories of people who are forgotten or left behind and highlight the bias we inherently have. You can find Steffi on Instagram here.
And secondly, the also wonderful Tine who you can find on Twitter at @SayTine. We’ve known each other for a number of years now and we bonded over a mutual love of food. We have been allies in the language matters movement. Tine’s feminism has always been aligned with my own, but she has introduced me to different people and ideas that have made me consider some of my own ideas.
Accessible Dtech information…
…from the always enthusiastic and excited Nerdabetic. I met Kamil for the first time a year or so ago and discovered that he is every bit as awesome and lovely in real life as he is online. I love the way he makes the latest in diabetes tech accessible and relevant to tech-imbeciles like me while also making it relevant to people whose interest in and understanding of technology generally makes my brain synapsis short circuit. It’s great to see Kamil appearing in the global DOC more with appearances on diaTribe. Kamil’s YouTube channel is here.
Brilliant photography…
…from a DOC stalwart. Mike Durbin was one of the first people I noticed in the DOC when I started participating in DSMA tweetchats over ten years ago. I’ve never met him, but am always interested in what he has to say, and his thoughtful takes on the diabetes world. Mike appears in every single presentation I give about diabetes peer support and the DOC because I always share this picture. It speaks community to me.
On top of being such an integral and wonderful part of the DOC, Mike is a truly outstanding photographer and this year, I have found myself absolutely obsessed with what he has shared. You can see his work on Twitter here.
More Clever creatives
I adore the gorgeous artwork Nicole Buchanan shares on her Instagram. She absolutely nails diabetes moments with stunning designs and clever captions. I’ve shared so many of her posts because it’s like she has climbed into my head and then perfectly explained the mess in there with a beautiful illustration. You can follow her on Instagram here.
Another favourite diabetes creative is Katie Lamb, another talented illustrator who manages to capture diabetes in her lush drawings. She’ll even draw you for a small fee! Find her here.
Aussie Jenna Cantamessa continues to share beautiful drawings on her Instagram here, and she has just opened an Etsy store so you can own one of her beautiful pictures.
Special mention to dedoc for keeping PWD at conferences…
…because it would have been all too easy for us to have been forgotten with conferences going online. Bastian has done a stellar job getting DEDOC Voices up and running, offering scholarships to PWD to be part of ATTD (the only IRL large-scale conference this year), EASD and ISPAD.
CWD keeping people connected
Children with Diabetes did a herculean job of not only running hugely successful Friends for Life conferences online, but also churned out relevant content all year, and seemed to run a bazillion meetups to keep people connected. In case you missed the fireside chat hosted by Kerri Sparling about #LanguageMatters, you can play catch up here.
Spare a Rose…
…will be back next year, but I just wanted to mention the amazing efforts of the community this year as we smashed all previous records and delivered a magnificent USD$73,748 straight to Life for a Child. How remarkable is it when the DOC stops looking inwards??
The offline DOC friends who kept me going…
…are the reason that I have reached this stage of this year with some sense of balance. A huge thank you to the squad of four friends from the US & UK who have shared their lives with me throughout this clusterfuck of a year in an endless message thread that has kept me going. And the IRL friends too – with special mentions to Georgie and Jo. I am so grateful we live close to each other.
And don’t forget…
…please do consider making a donation to Insulin for Life’s Secret Santa Campaign.
Finally…
…that’s all from me for 2020. I’ll be back in the new year, but for now I am switching off and doing everything in my power to be less busy, less online and less engaged. Probably the only downside I see with Loop is how reliant it is on being close to my iPhone at all times, because honestly, I would like to let my phone battery run flat and not charge it up again until the end of January! But I am making a concerted effort to turn off and ignore notifications and be more present with the people I am so, so lucky to spend my life with. To those celebrating, have a wonderful festive season. Thanks to everyone who has stopped by. See you in 2021.
It’s International Women’s Day and while I like to celebrate the incredible women in my life every day, I’m not above using the occasion to showcase some of the womenfolk in diabetes who have such an impact on our community.
So here are just some women working in, with, or around diabetes. This obviously isn’t an exhaustive list. There are so many women I could have mentioned. Please use the comments section below to add anyone I may not have mentioned. These women here have come across my radar on one or many occasions in the last twelve months, which is why wanted to celebrate them here today. They all have one thing in common: they get stuff done. And they support other women.
Actually they have another thing in common. They’re a little bolshie and sassy. And I love that about all of them!
Kerri Sparling
I met Kerri in a creperie in New York back in 2011. Two weeks prior, we’d just missed each other at a diabetes conference in Dubai, but made up for our lousy timing when we realised that we would be in NY at the same time. As we greeted each other, I had a slightly weird moment of feeling as though a character in a book I had read over and over had come to life because in person she was the same disarming, open and hilarious person she is on the page (or rather, screen).
The impact Kerri’s work has had on women with diabetes is monumental. I can’t count the number of times that I have heard her name when women with diabetes have spoken about their engagement with the DOC. She is one of the first people I direct women to when they are looking for information about anything to do with diabetes.
Last month, Kerri announced that in May she will be updating her SixUntilMe blog for the last time. She is not disappearing from the diabetes world – let’s be clear about that. She’ll still be writing; she’ll still be here. I’m glad that she’ll still be around to share her powerful voice. And cat GIFs. Her cat GIF game is strong.
Karen Addington
JDRF-UK is blessed with Karen as their CEO. I’ve been fortunate to spend some time with Karen in the last twelve or so months and have loved getting to know her. I’m always impressed with her ability to graciously ensure diabetes is on the agenda, and keep conversations current and relevant. I also love that she knows the value of diabetes peer support and community and the voice of the person living with diabetes. More diabetes organisations could do with leaders like Karen!
Cherise Shockley
This whole post could have been about Cherise. She is a shining and guiding light and an example to so many of us. But today, I want to highlight her new podcast ‘Inspiration Exchange: Diabetes Moments’ that will highlight different people affected by diabetes. The idea is that it will feature people in the community and share their experiences.
Cherise is one of the hardest working people know. She shows up – again and again and again – backing that up with continuing to deliver support to anyone who needs it.
More about Cherise’s new podcast here.
Elizabeth Snouffer
Whilst I had heard of Elizabeth, I only really came to know her last year when she joined the organising committee for the LWD stream that I am leading. Elizabeth is the editor of the IDF publication Diabetes Voice, and a journalist and writer. She is also a vocal advocate for insulin access for people around the world.
I’ve really enjoyed reading Elizabeth’s writing recently, especially what she has written on diabetes distress and health professional engagement.
Follow Elizabeth on Twitter here.
Miss Diabetes
If you’re not following Miss Diabetes on Insta get on it now! It’s the brainchild of New Zealander, Janina, who has lived with type 1 diabetes for over 20 years. Her cartoons are clever, cute and cutting. I’ve found many familiar moments in her creations.
Jennifer Dyer
I always say that there needs to be more than diabetes as a connection. That certainly is the case with Dr Jennifer Dyer. Jen is a paediatric and adolescent endo and an entrepreneur. She is smart, vocal and open about all sorts of diabetes issues that are often considered taboo. At ATTD last year we had a frank discussion about diabetes and sexual health and I loved her matter-of-fact attitude.
I already would have thought she was pretty great, but it seems we share a love for New York, MAC lipsticks, Audrey Hepburn, oysters and Sophia Loren. I know that if I was diagnosed as a teenager, Jen would have been exactly the endo I would have wanted to see because she knows life is about so much more than diabetes.
Weronika Kowlaska
Weronika writes the Blue Sugar Cube blog, started the Connect1ons Campaign which showcases the advocacy efforts of people with diabetes from around the world, is a gifted designer and illustrator and spends a lot of her online attention as part of the #Insulin4All movement.
I recently caught up with Weronika in Brussels where I became almost dizzy hearing about all her different activities, which also include being involved in the International Diabetes Federation.
Check out Weronika on Insta here.
Sana Ajmal
Sana continues to elevate the cause of women with diabetes in her home country, Pakistan and share often heartbreaking stories of discrimination and stigma. She is a writer and speaker, and has joined me on the organising committee for the Living with Diabetes stream at this year’s Diabetes Congress.
Read more about Sana in an interview here.
Alecia Wesner
Guinea pig extraordinaire, Alecia puts her hand (and any other part of her body) up to participate in diabetes research at every opportunity. And then she gets on stage and talks about it to encourage people to donate. She is one of JDRF’s most visible speakers and is an absolute star.
Oh – and she also happens to be a talented artist who designs the most magical lighting, and you should check out her handmade Eye Candy range of jewellery .
Alecia’s Eye Candy can be found here.
Ashley Ng
I’m lucky to frequently catch up over coffee with Ashley to hear what she is up to, and she is always up to a lot! Ash has been a vocal advocate to reduce the stigma associated with diabetes. She set up a Facebook group for young adults with type 2 diabetes, and has made it a safe, friendly place for open discussion. And she is a co-founder of Beta-Change which brings together people with diabetes from around the globe. All this is on top of her real job where she is Dr Ash and a lectured in nutrition. She is busy. Very busy.
Find out about Beta Change here.
Melissa Lee
Diabetes technology can be bloody confusing, but Melissa Lee knows how to explain it so it makes sense to idiots like me. Melissa is the Director of Community Relations for Bigfoot Biomedical, charged with sharing the organisation’s vision and progress. She does it well.
Melissa is an active member of the diabetes online community and I always love the way her comments are clear and direct. Oh, and her D Parodies never fail to amaze.
This D Parody of ‘Seasons of Love’ is magical.
Kim Henshaw
I think of all the women on this list, Kim is the one I’ve known the longest. We were new mums together, and co-founded the #OzDOC weekly tweetchats. And we worked together for a number of years at Diabetes Victoria.
Here’s the thing about working for a diabetes organisation. It’s a tough gig sometimes to have diabetes in your professional as well as personal life. There are days where it can seem that everything is about diabetes. Here’s another thing about working for a diabetes organisation. You can’t make it about yourself, and Kim has always excelled at ensuring that she never has an agenda that is self-serving. These days, her work around families of kids with diabetes is making a difference to so many.
Follow Kim’s occasional tweets here.
Moira McCarthy
I’ve only met Moira once and that is, quite frankly, not good enough. Thankfully, through the magic of Facebook, I get to engage with her and see what she is up to. She is a journalist (writing about incredible travels) and also writes about diabetes.
Moira is also a remarkable fundraiser, having raised millions for JDRF. She does ridiculously demanding bike rides for the organisation, attracting donations from all over the world. (It’s hard to say no to Moira).
Read my favourite ever piece by Moira here.
Dana Lewis
There would be few people who are interested in diabetes technology who would not know Dana. I have had people actually say to me ‘Oh, you’ve met’ her? What’s she really like?’ such is her rockstar status. The answer to that question, by the way, is kind, generous, smart, emphatic and funny. She is who I thank daily for the whole idea of DIY hybrid-closed loop systems. She is also a kids’ book writer, researcher and (when not dealing with broken limbs) runs miles and miles. I’m yet to be convinced there is only one of her because she does so much, but I’ve only ever been in the room with one Dana Lewis at a time.
Daniela D’Onofrio
I have a group of Italian women I see at diabetes conferences in Europe. I adore them and love being welcomed into their crew. I once said to Aaron ‘I hung out with the Italian women again, and jeez – they are loud and bossy. And they don’t shut up.’ He just looked at me before muttering something under his breath that sounded a lot like ‘Welcome to my world,’ but I’m sure I misheard, because where would he know bossy, loud, talkative Italian women?
Anyway, Daniela may be loud and bossy and talk a lot, but she backs it up like you wouldn’t believe. She started Portale Diabete, an online network, after her brother received a kidney pancreas transplant. There are over 25,000 members of the Portale Diabetes Facebook group and the discussions are constant and current. Daniela added a new string to her bow last year when she decided that she’d try her hand at fundraising and naturally that has been a success.
Follow Portale Diabete on Facebook here (fluency in Italian – or Google translate – required).
Jane Speight
When Jane landed in Australia to be the Foundation Director of the ACBRD, there were very few HCPs talking about the behavioural side of diabetes. People with diabetes were talking about it, but that was really where the conversation started and ended.
Jane and her ACBRD team got straight to changing that, and today, she is a permanent fixture in the diabetes landscape both here and around the world. She has spearheaded the diabetes and #LanguageMatters movement in Australia and globally and is a fierce advocate for people with diabetes. How lucky we are!
As well as collaborating with her on a number of projects (where she is always so gracious in the way I bring down the overall tone of any discussion), I also get to call her a friend. She is my constant conference and doughnut-eating companion, and makes the overwhelming and frantic nature of conferences somewhat bearable.
Georgie Peters
Georgie put all right in the world by returning from her year in Paris to take up a job teaching French in the next suburb to where I live. Thank goodness, because our late night chats could go on forever! It’s much easier being in the same time zone (and side of the city)!
I know I’ve written about her a number of times, but Georgie’s work in diabetes, eating disorders and body image with Body-Posi-Betes continues to push boundaries. I’m not sorry for sharing again.
Follow Body-Posi-Betes on Insta here.
Stacey Sims
Stacey runs the award winning podcast Diabetes Connections which features prominent diabetes advocates from around the world. Stacey’s son has diabetes and she created the podcast to help reduce the isolation that many people with diabetes face.
Check out (and listen to) Diabetes Connections here.
As I said earlier, this is not an complete list. There are so many other women who also do amazing things in the diabetes space. This list just happens to be some of the women whose work I’ve seen and loved over the last twelve months. And the other thing is that I have seen firsthand how they have supported and lifted up other women. That doesn’t mean that we always need to agree or that we all need to be singing from the same hymn sheet. But it means that we look out for each other, we promote each other, we cheer each other on. These women all do that in spades, and that is one of the most important things to me.
I’m heading to Sydney this morning (it’s early…too early) for the Australasian Diabetes Advancements and Technologies Summit – ADATS, (follow along at #ADATS2018), which had me thinking about the conference last year where I spoke about Loop, scared a shitload of HCPs, was almost traumatised into never speaking again in public (almost – didn’t happen) and was happy to be branded non-compliant.
Today will be a far gentler experience – my role is as a member of the organising committee, and as a session chair. Surely no one will want to sue me for that. Right?
As I ponder that, and reminisce about last year’s talk, here are some links. So many links that I have been wanting to share. So, have a cuppa, have a read, and share stuff.
Also, being deliberately non-compliant is kind of fun…
(Disclosure first: My flights from Melbourne to Sydney are being covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.)
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Finally DIYAPS makes it to the mainstream media in Aus
I’d heard of The Saturday Paper, (which was a surprise to the journalist who interviewed me), but apparently not all that many people have. It’s a weekly newspaper (somewhat unimaginatively named – it’s a paper and comes out each Saturday) with long-form articles. One of those articles was about DIYAPS and came about after journalist Michele Tyde heard about the Diabetes Australia DIYAPS Position Statement.
Read the DIYAPS Position Statement here.
The body part is connected to the PWD
‘Talking about the “diabetic foot,” the “diabetic kidney,” or the “diabetic eye” suggests they are somehow separate from the person whose body actually hosts the diabetes. This language suggests the diabetes-complicated body part is more like a malfunctioning car part that needs service – if only we could be provided with a courtesy foot, eye, or kidney to use until our own is better!’
The language at ADA this year (all the way back in June…all the way over in Orlando) didn’t really set off too many alarm bells. Until we had a good look at the program. I wrote this piece with The Grumpy Pumper for diaTribe about how it seems that #LanguageMatters a whole load less when talking about diabetes-related complications…and that needs to change.
Conference blogs
It’s great to see the Ascensia Diabetes Care team continue to support diabetes bloggers by inviting them to write up their thoughts on diabetes conferences. The latest contribution is from Sascha Stiefeling (who blogs at Sugar Tweaks) where he gives some insights into the start of EASD. (It was written in German and translated into English.)
Oh – and here’s the post I wrote for them about the Australasian Diabetes Congress a couple of months ago. (I was not paid to write this, or supported by Ascensia to attend, but I did work with them on their Social Media Summit.)
No weakness at all
On Mental Health Awareness Day this year, UK writer and poet David Gilbert wrote this beautiful post about the strength – not weakness – of living with mental illness.
How we are wrong about obesity
This piece about obesity is a must read. It talks about how weight bias from healthcare professionals and stigma often results in higher weight people avoiding going to the doctor because they fear discrimination, not being believed and being shamed.
More on weight stigma
And read this piece (also on diaTribe) about how weight stigma hurts people and affects health outcomes.
Keep Sight
This week, Diabetes Australia officially launched the first ever national eye screening program, Keep Sight. The program will make it easier for Aussies with diabetes to get their eyes checked. You can read about the program here (from when it was announced back in July).
Disclosure: I work at Diabetes Australia, but was not asked to write about this program. I’m doing so because it is important.
Your story is important
True champion of listening to ‘the patient’, Marie Ennis-O’Connor wrote this wonderful piece about the power of storytelling in healthcare.
Always be kind
I’m always fascinated to read stories from HCPs who write about their experiences on the other side of healthcare. Moving from care-giver to the one needing care can be life-changing. In this BMJ Opinion piece, health researcher Maria Kristiansen writes about how important compassion and kindness from healthcare professionals were for her and her family during her young son’s illness and death.
More on kindness (because we can never have enough)
The first sentence of this article in BMJ by Dr John Launer had me hooked: ‘I’m not a clever doctor, but I’m a kind one’. Have a read.
Diabetes in hospital
I know I’m not the only one to be terrified of needing to go into hospital, worrying about a lack of knowledge about type 1 diabetes treatment and my technology, and having to fight to maintain ownership of my own diabetes care. Adam Brown at diaTribe has written about his recent trip to A&E, surgery and subsequent recovery after his appendix ruptured. Lots of great tips for anyone who may wind up in hospital.
Digital diabetes
How can digital medicine and research, and artificial intelligence transform diabetes? That’s the question research scientist in diabetes, Dr Guy Fagherazzi, asks in his (open source) review in Science Direct that you can read here.
Bake these!
And finally…It’s nearly the weekend and if you have a spare 20 minutes, you really, really should think about baking these! They are crackled parcels of molasses, spice and all things nice and are, quite possibly, one of the best things I’ve ever baked.
New year, new jumble. And lots of saved links from the last few weeks to share.
#OzDOC 2.0
Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.
Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)
And while we’re talking tweetchats…
…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.
Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)
Jane’s profile
It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.
Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!
Read the article here – it’s free, but you will need to register/log in to access it.
(Click photo for source)
Dear ‘patient’
I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.
I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.
HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.
Interesting idea. And interesting to see if it has legs…
Writing for Grumps
After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)
This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.
Get ready for Spare a Rose spam
This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.
Hospital admissions and T1D study
Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.
The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au
(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)
Future of medical conferences
I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.
(Click for original tweet)
Because #NothingAboutUsWithoutUs.
Does the story we know and love about Banting need a rewrite?
I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.
It was the best of times, it was the worst of times…
This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.
More D Merch
Totally true!
Click image to get your own!
In Australia, WDD lasts for about 36 hours. From the first ‘Happy World Diabetes Day!’ to the final SoMe post with the #WDD hashtag, it was a day-and-a-half of diabetes activism and advocacy and awareness raising. Thank the gods it’s over!
Here a collection of things I’ve found interesting and wanted to share from this week…and most of them are by or about real life Diabetes SuperSHEroes!
One dollar a day
On World Diabetes Day, Life for a Child launched their new 1,000 Donor Campaign. An ongoing donation of USD$1 per day will ensure a child with diabetes has access to life-saving insulin. 1,000 donors will help 1,000 young people in need.
Read more about the campaign, and learn how to donate, here.
Merch!
My wardrobe at the moment seems to be predominantly made up of diabetes t-shirts. Most of them have a very clear Loop theme…I wonder why! (Here is where to get to find these designs.)
And then, this week, I received this in the post from Casualty Girl and it is definitely going to be on high rotation this summer:
Also, from Casualty Girl, a new pouch to house my glucose meter (to go along with my diabetes spares bag):
Casualty Girl is the brainchild of talented designer Monica Vesci, a complete and utter star in diabetes sartorial excellence! Have a look at her e-shop for these products and lots more here.
Diabetes and feminism
My post on Monday about privilege and diabetes generated a lot of discussion. I wish I could say that was the end of the chatter and cries of ‘What about me?’ because of the women and diabetes theme, but, alas, it was not.
Georgie Peters, who I adore and admire, wrote a great piece on her blog about the issue too. Read it here.
Something fun
Sure, it’s just a bit of fun, but lots of people have had a giggle as they worked out their name using the Diabetes Australia SuperHEro Name Generator.
Mine is Phantom Islet Injector. Which, when you think about it, is actually kinda true!
Carolyn’s Robot Relative
Another amazing woman, Dana Lewis, has added yet more strings to her bow, and is now a published children’s book author. I received my copy of ‘Carolyn’s Robot Relative’ on Monday.
It’s a great way to explain diabetes devices (and other health gadgets) to kids.
You can get your own copy on Amazon here, and because Dana is wonderful, she she will using any profits from the sales of the book to cover the cost of copies she will donate to schools and hospitals. She really is one of the best people in the diabetes community!
How to NOT be ‘patient-centric’
PHARMAC, the New Zealand government agency that decides which pharmaceutical and medical devices to publicly fund in NZ, announced this week a new sole arrangement to limit glucose monitoring to meters and strips from Pharmaco (NZ), distributors of Caresens products.
This means that people with diabetes in NZ able to access subsidised meters and strips will have access to only four meters.
Not a great result for people with diabetes who want choice in their diabetes devices, is it? More here.
Insulin affordability in the US
Laura Marston has been a long-time advocate for affordable insulin for people living with diabetes in the USA.
She wrote this piece for the BMJ Blog about her own story of managing insulin affordability, explaining that since her diagnosis in 1996, the list price of a vial of Humalong has risen by over 1200 per cent (that’s not a typo).
Read Laura’s piece to get a good understanding of the situation in the US, and just how messed up – and tough – it is for people with diabetes just trying to afford the drug they need to stay alive.
Asha’s diabulimia story
Asha Brown founded, and is now the Executive Director of, We Are Diabetes, an organisation supporting, and providing information and education for people living with diabetes and diabetes-related eating disorders.
She has written this important piece about living with diabulimia that is a must-read for anyone and everyone affected by diabetes.
What’s next?
There’s no rest for the wicked! The end of WDD does not signal the finish of diabetes activities for the year. In just over two weeks’ time, the IDF’s World Diabetes Congress kicks off and it’s the only large-scale diabetes congress to have a whole stream dedicated to living with diabetes. Lots of diabetes advocates from all over the world will be there. You can start to look through the program here.
Of course I made Blue Circle cookies for WDD.
I used this recipe, (thanks Nigella), and put to use the cookie cutter I bought for this very purpose back in February!
There’s lots happening, but I can’t look away from my Loop app at the moment because I’m so damn excited and obsessed! (I’ll be writing something about it sometime this week.)
But if I wasn’t doing that, I’d be (re)reading these things…
Why it costs so much to see a specialist
I’ve always paid to see my endos privately. In fact, I generally ‘go private’ for all my healthcare needs – I can’t remember the last time I was bulk-billed for a medical consultation.
It does cost a lot, and I am grateful I can afford it, but the excessive costs often discourage people from seeking the right care they need. Of course, we do have excellent public health in Australia. My choice for seeing HCPs privately include wanting continuity of care, and not being subject to frequently very long waiting periods.
This piece in The Conversation looks at why specialist care is so expensive. And what can be done to reduce costs.
Lookiee! A diabetes Wookiee!
For those who participate in OzDOC (and other DOC activities) you may have come across David Burren. I met David last week to talk all things tech (actually, I just fired questions at him about Loop and he patiently answered them without rolling his eyes even once). He’s started a diabetes blog all about diabetes and technology and, thankfully, it is in language that even I can understand.
Check out David’s Bionic Wookiee blog here.
Statues are like tumo(u)rs.
With all the nonsense going on in America at the moment, this piece from McSweeney’s most adequately explains why the ridiculous idea that statues commemorating less than favourable moments in history need to remain. Here’s my favourite part:
I view this tumor as an important symbol of your body’s history and heritage. Removing the tumor would be yet another example of misguided medical correctness in today’s liberal America. I protest this surgery and refuse to whitewash your rich medical history. The tumor must be kept prominently displayed inside your body.
Do better, America. We all know you can.
More on what’s on the inside
Mel Seed’s blog about normalising mental healthcare in diabetes follows on from DX2Melbourne and is well worth a read. Read it here.
Diabetes is just…
This…
Faster insulin coming to Aus
A couple of weeks ago, I shared on my socials the exciting news that ultra-fast insulin, FIASP, had received TGA registration. No actual ‘launch’ date info as yet, although next week is the ADS ADEA Annual Scientific Meeting, so we may hear more then.
And in news that we already know…
Apparently, CGM is not just for abdomens anymore… File under ‘No Shit Sherlock’.
Swear-y
My blog emails keep getting blocked by the profanity filter at my husband’s work. Every now and then, he forwards me the message he’s received which states that the email was not delivered due to ‘offensive language’. #SwearyWife
This Twitter account definitely wouldn’t make it through, but it’s one of the best things I’ve seen on the interwebs for a while. I’d like to print THIS up poster size and put it on the wall of my office/wear it on a t-shirt, but perhaps that’s not appropriate.
D-parents and sharing the scary parts of their child’s diabetes online
I’ve linked to Moira McCarthy’s writing before because I think that she gets it right every single time she writes about the role of parents in their child’s diabetes.
This piece asks parents to consider if sharing their child’s scary and dramatic diabetes stories online is doing more harm than good. (I rather clumsily explored a similar issue last year in this post.)
Read her piece at ASweetLife here.
4Ts on Diabetes Mine…
Last month, during National Diabetes Week, in an endeavour to get our 4Ts message out as widely as possible, the good folks at Diabetes Mine allowed me to write a little about our campaign. You can read that here.
Living and loving someone with diabetes
As much as I think I am the most delightful and easy-to-live-with person in all the world, I have to admit that diabetes can and does impact on all relationships… and makes me perhaps not the most delightful and easy-to-live-with person. Aaron and I chalked up 23 years together yesterday. Diabetes has been part of the equation for over 19 of those years.
Diabetes advocates Nicole Johnson and Lorraine Stiehl have written a new book which has been called a practical guide to loving a person with diabetes. I’ve ordered a copy and will be leaving relevant pages open for my loved ones to read.
You can get a copy of What To Do When Your Partner Has Diabetes: A Survival Guide from Amazon.
Meme-y and true
There are a lot of diabetes memes out there, but sometimes I see one that just hits the mark so perfectly. Such as this from a TuDiabetes community member:
A week away from blogging during what happened to be a super busy week in the diabetes world. Let’s play catch up!
ICYMI #1
Bigfoot Biomedical + Abbott Diabetes Care. Details here. Great commentary from diaTribe here, and Diabetes Mine here.
ICYMI #2
Did you see Adam Browne’s piece on diaTribe about the worst food advice he’s received?
When I was diagnosed I was told ‘Eat as much low GI food as you like’ and I remember at the time that not sitting well with me. It turned out to be a disaster because I wasn’t taught to count carbs, but there was this expectation that I would be eating large quantities of rice, pasta, bread and potatoes to match the insulin dose I was prescribed.
I do wonder how different things would be had I instead been given advice that helped me manage my glucose levels, rather than feel I was constantly scuffling with them!
Vaccine buzz
I’ve always been interested in the research developing vaccinations to prevent T1D. This out of Finland was doing the rounds yesterday.
I for one welcome our new robot doctors
This article from Forbes is all about how robots will be taking on an increased role in healthcare.
#LanguageMatters in the UK
After ADA, I wrote that there was some excitement from the UK about developing a language position statement. This blog post from Rosie Walker (Successful Diabetes) and Anne Cooper got the ball rolling in terms of getting some feedback from people with diabetes with a call out for people to have their say.
(And there is a tweet chat about this very topic, which for those playing at home (i.e. Australia) kicks off on Wednesday morning at 5am. I’m going to try to be there, but seriously, I suspect I’ll read up on it at a decent hour once the coffee kicks in!)
And while we’re talking language
I am interested in language beyond just the diabetes space and was interested to read this piece about US Senator John McCain’s diagnosis of brain cancer and the inevitable rhetoric that followed. Many promised that Senator McCain would survive because he is a ‘fighter’ and a ‘battler’.
I don’t like using this sort of language to discuss health conditions, because in a fight, there is always a winner and a loser. And it suggests that people who do not survive must not have fought or battled hard enough when we know that is absolutely not true.
Why I write…
There was a lot in this piece on Medivizor from Stephanie Zimmerman, where she shares why she writes about healthcare.
Type 1 and the egg
This is a beautiful and so simple metaphor by Maureen, who tweets as @MumofType1 to explain what living with type 1 is all about for her son.
How much access do you have to your HCP notes?
This study looked into the experiences of healthcare users with reading and providing feedback on their visit notes.
#HelloMyNameIs heading to Sydney
If you are in Sydney on 26 September, you may be interested in this free event about the #HelloMyNameIs campaign which was created by Dr Kate Granger, (I wrote about the campaign here). This week marks the anniversary of Kate’s death, and her husband, Chris Pointon, will speak about the movement.
And finally something funny…except it’s not
Gwyneth Paltrow is an acteress, so why anyone would seek medical advice from her is a little confusing. But apparently, she has armed herself with a team of healthcare hacks professionals so that she feels that she is more than qualified to sprout wellness rubbish.
In recent times she has faced the wrath of the science community on Twitter because, amongst other absurd ideas, she suggested that women should shove a jade egg up their vaginas to…actually, I’m not really sure why. I’m not going to comment on that (beyond saying: don’t do it) because superhero OB/GYN Dr Jen Gunter has already done that.
But when one of her healthcare hacks starts talking about autoimmune conditions, you bet I’m going to chime in. Especially, when one of them, Dr Steven Gundry, claims this: ‘I have yet to see an autoimmune disease that cannot be cured or put into remission by simple dietary changes and supplementation’ and then goes on to suggest which supplements will cure autoimmune diseases. Stop it!
Gwyneth – I really liked you in that movie about deadly viruses (possibly because you died in the first 15 mins), but you need to really shush now about healthcare. And stop suggesting women shove jade eggs up our vaginas, for god’s sake!
Diabetogenic 