Month: July 2018

That Time I Was In The Newspaper

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A few weeks ago, I agreed to be a media ambassador for Diabetes WA’s National Diabetes Week campaign. If you’ve been living under a rock this week, the campaign is calling on earlier detection of the signs and symptoms of diabetes.

Obviously the urgent and life threatening nature of type 1 diabetes is what picked the Editor’s interest the most, and I was told that The West Australian newspaper was interested in running a story. This is despite Diabetes WA’s media release providing equal attention to type 2 diabetes. (However, I do not know if the person with type 2 diabetes profiled in the release was prepared to do media).

The West Australian, in my opinion, are notoriously bad. The quality of journalism, in my opinion, is absolutely terrible. Unless you regard AFL footballers, Channel Seven personalities and Channel Seven television programs as news. The last diabetes article I read had the headline ‘cash strapped diabetic sufferers.’

So, it’s safe to say that I was feeling my fair share of nerves as I opened that newspaper to read how the story was covered yesterday morning.

I found out that The West were planning on running this story last Tuesday. The Editor left me a voice message late on Friday, which I promptly responded to with another voice message outlining my availability and willingness to chat. After a few SMS exchanges a day later, a photograph was arranged for Wednesday morning during Diabetes Research WA’s event for National Diabetes Week.

I was so looking forward to getting a professional photograph done, and jokingly told the photographer to make sure that I was smiling. I like to call myself Chandler Bing, because I always think that I am smiling during a photograph, only to see a very serious looking end result. I was also looking forward to getting a cheeky Instagram of me being photographed, and was bitterly disappointed to be told that I wasn’t allowed to.

We made our way across the road to the beautiful Lake Monger reserve, overlooking the city skyline and glorious Perth sunshine. Instead, the photographer placed me into the bushes, stuck a camera onto one of the trees and told me to walk toward him while looking sideways at this camera. I was then asked to go back and repeat the exercise, this time looking forward at him.

“Shouldn’t I be smiling?” I asked after realising that this was not a warm up exercise but the real thing.

“Isn’t this supposed to be a really serious story?” He replied.

After taking a few photos of me smiling, purely to humour me, our exercise was over.

As I made my way back toward the event I was attending, I expected that the Editor did not plan to ring me as she had said and that I would not have a chance to deliver some key messages on language.

I knew that I would have to get in touch with her and politely deliver the two key messages I had developed from some crowdsourcing during Tuesday night’s OzDOC chat, along with a copy of Diabetes Australia’s Position Statement on Language and Diabetes. I didn’t even care if my message didn’t get through, I only knew that I wouldn’t be able to live with myself if I hadn’t seized this chance to put my case forward.

As expected, I received a pointy email response back highlighting this Editor’s 25 years of medical writing experience. After somewhat defensively being told that terms such as ‘diabetic sufferers’ aren’t used, I had a suspicion that my message had gotten through.

Back to that moment where I was a bundle of nerves, flicking through the pages of that newspaper yesterday morning. Despite the serious photo, I couldn’t be prouder of the outcome.

‘Diabetic sufferer’ is nowhere to be found!

Hope.

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I don’t really have a great deal of faith in a cure for diabetes. I do believe that we have lost sight of curing diabetes. While technology may be exciting (case in point), every new entry onto the market merely seems to be a pathway to the next product or upgraded system in the pipeline. There does not seem to be an end goal of eliminating the need for these devices altogether and curing diabetes. Perhaps people like me are to blame for feeding this diabetes technology frenzy.

Yesterday, I had the pleasure of attending Diabetes Research Western Australia’s Exploring Diabetes Expo to hear about some of the latest and greatest diabetes research being funded in WA.

Of course, the best thing about attending events like these is connecting with new and familiar faces in the diabetes community here in Perth. I met someone who was looking for answers to better manage his type 2 diabetes. I overheard a father talking about his newly diagnosed type 1 daughter, attending to try and get on top of it. It was also great to catch up with a few familiar faces.

Being surrounded by supporters of diabetes research and people in the scientific community, I was reminded of my time at the ADS-ADEA conference last year, where the company of people with diabetes is not the norm. I really felt that some of these people could benefit from spending more time in the company of people with diabetes.

The highlight of my morning was hearing Professor Tim Jones, head of Endocrinology at Perth Children’s Hospital, speak about closed loop systems. Despite all of the advances in technology, blood glucose control hasn’t improved in the last five to ten years and only 20% of patients are meeting blood glucose targets.

My heart sank hearing Professor Jones tell the audience that reason for this is that type 1 diabetes is simply a hard condition to manage.

I have no doubt that type 1 diabetes is a difficult condition to manage. But equally, I feel that clinics are under resourced and people fall through the cracks, unable to reach their full potential. One fabulous person with diabetes in attendance lamented her frustration at having to hear about new technologies through peers, rather than her healthcare professionals. Another friend in attendance lamented that the public system has little to be desired with it’s very long waiting periods.

The morning also introduced us to some awesome Artificial Intelligence retinopathy screening, which I’m not quite sure differed too much from that of an Ophthalmologist or even an Optometry screening.

There were also sugar free cupcakes, a coffee van and a great view of Lake Monger on a glorious Winter day.

Admittedly, diabetes research is not something that I can get excited about. Not like I do with the tech. But if there is one person that gives me hope in a cure for diabetes, it is Sherl Westlund, director of Diabetes Research WA. Sherl’s passion for the research grants her organisation provides gives me a glimmer of hope that we will find a cure for diabetes, hopefully in my lifetime.

If there’s one thing that I really do need, it’s hope.

Its About Time…To Raise Awareness of Diabetes!

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This week, I’ve been lending my voice to Diabetes Australia’s National Diabetes Week campaign that is calling on earlier detection of both types of diabetes. It is a campaign that I am really, really proud to support.

As a person living with diabetes, previous campaigns have been difficult to stomach. They’ve often focussed purely on the serious side to diabetes. While these campaigns understandably carry a political agenda for things like greater funding and improved outcomes for people with diabetes, they often lack one crucial element. Audience participation from people with diabetes.

People with diabetes want nothing more than to raise awareness of diabetes during diabetes week. What I love so much about this year’s ‘Its About Time’ campaign (and last year’s, for that matter), is that it hits the right balance of seriousness while also encouraging those of us living with diabetes to raise our voices and promote greater awareness of diabetes.

The type 2 campaign launched on Sunday, calling on everyone at risk to get their diabetes screenings, regular bloodwork and checkups with GPs. This is especially true for those over the age of 40, those who may have a family history of diabetes, those with a waist measurement of over 40 inches and many others. If you know someone who might be at risk, encourage them to get their diabetes screening! There’s also a free calculator that will help you to assess your diabetes risk here.

People can live with type 2 diabetes for up to seven years before it is diagnosed. The onset of symptoms are relatively slow compared to type 1, and many people still feel normal until the condition has progressed further and complications may have developed. Most of these complications would be preventable with earlier detection.

The type 1 campaign launched today, calling on everyone to know the four ‘Ts’ of type 1 diabetes – Tired, Toilet, Thirsty and Thinner. 1 in 5 people are still presenting to hospital in a life threatening state of Diabetic Ketoacidosis (DKA) before being diagnosed with type 1. DKA and hospital admissions could be prevented with earlier detection of the four Ts from both our peers and our healthcare professionals.

One common argument that I see in the diabetes community, and one that I’ve certainly been guilty of in the past, is that type 2 diabetes takes focus away from type 1.

I see this campaign as something that brings the whole diabetes community together.

I think we can all agree that no matter the type of diabetes we have, we would all benefit from earlier detection. However we were diagnosed, I think many of us would still be able to find something small that could have been done better through a greater awareness of those signs and symptoms.

I truly believe that Diabetes Australia are doing a fantastic job at championing people with diabetes. Perhaps I am slightly biased as I have been involved with them in the past, but I truly believe that this is a brilliant campaign.

Let’s shout diabetes awareness to the rooftops!

Fellow people with diabetes, this is our week!

T1 Talk: National Diabetes Week Edition

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We’re back!

My friend Bec of Sweet and Sour Diabetes and I originally designed these conversations as a way to highlight the uniqueness of our experiences with type 1 diabetes, despite both being diagnosed just days apart with only a few years difference in age.

We’ve slacked off a bit with these conversations this year, but we did make up for it with some great conversation while taking in the breathtaking sights of the Parramatta river when we finally met up earlier this year. This is another amazing example of how diabetes has made my world a lot smaller. 

Today, we’re back to dissect all things National Diabetes Week.

The theme of this year’s National Diabetes Week is ‘It’s About Time,’ focussing on knowing the signs and symptoms of both types of diabetes. Would you have benefitted from a greater awareness of the signs and symptoms of type 1 diabetes when you were diagnosed?

Frank: I presented to my doctor with all of the typical symptoms of type 1 diabetes – feeling tired, thirsty, going to the toilet a lot and a looking much thinner. In hindsight, it’s hard to believe that this doctor was unable to recognise any of these symptoms. He diagnosed me with a simple virus, ordering bed rest and lots of hot fluids. Three days later I wound up in hospital vomiting, panting and an extremely rapid heart rate.

Obviously nobody wants to wind up in hospital. Physically, I definitely would have benefitted had that doctor, or the people around me, known those 4 Ts of type 1 diabetes. Mentally, I’m not too sure how I would have handled that diagnosis had I been diagnosed in my doctor’s office. Initially, having type 1 diabetes was nothing compared to having all of those physical symptoms finally relieved.

Bec: It’s so easy for doctors to miss the signs, because they do mimic that of a virus. I agree, for me it would have been a much faster diagnosis if I knew the signs. I was chronically thirsty for such a long time, but I didn’t know that could be a sign of type 1. I delayed going to my doctor for so long that when I eventually got there my blood sugar was in the 40s.

Let’s talk about type 2 diabetes. What do you think people at risk of developing type 2 diabetes need to know?

Frank: As a guy, we tend to only go to the doctors when we’re dying. Overall, people tend to just soldier on when they’re unwell, rather than stopping to look after themselves and recover sooner (our workplaces and cultures could do a lot more to support self care). Furthermore, it’s a lot harder for people with type 2 because the onset is much slower and most will feel quite normal.

Honestly, I think anyone at risk of developing type 2 could minimise that risk by simply staying in touch with their healthcare professionals, maintaining their regular checkups and bloodwork. Just as you and I already do because we live with diabetes.

Bec: I completely agree there is a lot more we could be doing to prompt people to seek medical attention and take care of themselves. People with a known risk of developing Type 2 absolutely need to know the signs, and surround themselves with a good healthcare team as early as possible. This means they have support should the need arise.

I think there also needs to be more education on what Type 2 diabetes is. It’s not all their fault, and I think that assumption and misconception is what delays people seeking medical attention.

What do you think are some of the barriers to people being diagnosed with either forms of diabetes earlier?

Frank: Too many people don’t know the signs and symptoms of type 1 diabetes. Our stories both demonstrate that. It’s scary to still hear stories online of people dying from undiagnosed diabetes today.

I think a lot of people diagnosed with prediabetes or type 2 diabetes don’t have supportive healthcare professionals. Many people are sent home by the doctor being told to lose weight and exercise more, without being referred to an expert such as a Credentialled Diabetes Educator. People will often feel guilty, confused or even in denial while the condition progresses further.

Bec: Type 1 is completely unknown unless you have a personal link to it. I guess all we can do is share our stories to try and combat that. It takes time for diagnosis because we don’t know what we’re looking for, and Type 1 isn’t the first thing that pops into your head.

Type 2 again has so many misconceptions that it puts people off seeking help. Why go in when you’re just going to be told the same thing time and time again- eat well and exercise. There needs to be more support from health professionals, more awareness of the real nature of Type 2 and more compassion from everyone. No one chooses to get a chronic illness.

The 4Ts of Type 1 Diabetes

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Happy National Diabetes Week! This year, it’s once again all about raising awareness of the signs and symptoms of both type 1 and type 2 diabetes. I know that I’ve been critical of diabetes campaigns in the past, but hit play and let me tell you why I think this a really good one.

(If you listen carefully, you might even be able to hear the whirl of the washing machine in the background…)