Cure

JDRF One Walk

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Yesterday, I braved a wet and blustery Sunday morning to participate in the JDRF One Walk.

I’ve heard of these walks that happen all over the globe each year, with a goal of funding research into a cure for type one diabetes.

To be honest, I don’t know too much about what JDRF does, but perhaps I’m not looking hard enough. However I do know from my own peers in the diabetes community, just how phenomenal JDRF’s impact is through the passionate individuals who are actively raising funds. Thank you.

My effort was, quite honestly, a last minute and half-arsed one. I joined to provide some moral support to my fellow Young Adult Diabetes Committee members, who as a team impressively placed sixth or seventh for funds raised. Go, team!

I am truly inspired by some of my peers who have impressively ran marathons while managing their diabetes in the name of charitable causes. I feel that if and when I do decide to ask the people around me for money, it should be for a cause that I am truly throwing my energy and efforts behind. This was not it. That idea is still sitting in the ‘some day’ basket in my brain, but one that I haven’t lost sight of.

It seems my effort in managing my diabetes around the walk was equally poor. After waking up to a blood sugar of 9.8 thanks to pizza the evening prior, I knew I was off to a less than ideal start. Correcting at the start of a walk that I thought would last ten or fifteen minutes, ended with a low at the finish line an hour later.

The blustery 5km walk took us across the Swan River, down the foreshore, over the new Matagarup Bridge, past Optus Stadium and back to Burswood Park where we were greeted with some rain.

I was equally rewarded for my efforts with a truly dreadful coffee from the coffee van, and overripe bananas from the Coles stand.

This was my first time participating. I had some excellent company around me, and I definitely haven’t lost sight of putting more effort into actually doing something like this. Some day. 

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.

Guest Post: Behind the Scenes of Diabetes Research

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Today I’m handing over the reins to Caroline Rudnicka, a diabetes research officer who also lives with type 1. I first connected with Caroline after hearing her speak at a local event hosted by Diabetes Research Western Australia, and today she shares with me a little about her connection to diabetes and an upcoming event to support diabetes research. 

I must admit that I don’t think too often about an end game when it comes to diabetes, so I really appreciate hearing from people like Caroline and the team at Diabetes Research WA who share such a passion for research. 

***

Frank: Hi Caroline. Can you tell us a little about your connection to diabetes? 

Caroline: Hi Frank and thank you for the invitation to guest blog on Type 1 Writes.

I was diagnosed with Type 1 Diabetes in 1989 while my parents and I were holidaying in Europe. My diagnosis was a horrible shock for my parents, who had mistakenly attributed my mood swings, weight loss and lethargy down to my young age and traveling. Furthermore, with no family history of T1D, my ‘spontaneous’ diagnosis really astounded my parents, who were previously completely unaware of the condition.

My diagnosis drove me to pursue a T1D-orientated honors project through the University of Western Australia. Currently, I work for Royal Perth Hospital as a research officer, and I have been fortunate to work in a lab group, supervised by Professor Vance Matthews, that is dedicated to type 2 diabetes research (although we are starting to investigate T1D complications too).

I feel lucky to be in the position where my work environment encourages me to constantly reflect on the potential mechanisms which promote diabetes development, and provides me with unlimited access to read high quality diabetes journals.

Frank: We first connected through your work with Diabetes Research WA. Can you tell us a little about that? 

Caroline: It was actually through my boss Vance that I was introduced to Sherl Westlund and Nat Caudle from Diabetes Research WA (DRWA) in late 2017. At the time, Sherl and her great team were organising their information night, “Diabetes, where is the cure?” when Sherl contacted me and asked me if I would like to present a talk about my experiences with T1D and diabetes research.

I must admit, I was initially apprehensive as I wasn’t certain that the audience would find me or my experiences very engaging. I was always under the impression that only diabetics cared about diabetes. However, having worked with Vance previously on a DRWA funded project, I felt flattered to do something for DRWA, a local organisation that strongly supports diabetes research. Hence I accepted their invitation.

I was surprised to receive a lot of positive feedback following my talk that night, and I was humbled that the experiences which I discussed managed to move many people in the audience. When I was driving home that night with my husband, he commented that my talk really opened his eyes to what I go through living with T1D, and this is despite the fact that we had been living together for years!

This made me realise the importance of openly discussing T1D and sharing experiences, to link T1D patients with each other and non-diabetics to raise diabetes awareness. As such, I was delighted to act as that link between DRWA and their audience on that particular night, and I hope to do more events with DRWA in future.

Frank: Your husband Joey is going to be participating in a charity fundraiser for Diabetes Research WA later this month. Could you tell us a little about the event, and how we could get involved? 

Caroline: My husband Joey is literally putting his body on the line as he participates in the “100 Fights in 100 Minutes Charity Benefit” on April 28th.

This is an event being hosted by the fantastic owners Noah Greenstone and Ron Amram from Leederville’s Combat Arts Institute of Australia (CAIA), a self defence facility where my husband trains. Noah and Ron are the masters of technique, and it is going to be so enjoyable watching all the competitors on the day.

The charity benefit is essentially a test of endurance, as each competitor participates in 100 friendly rounds of sparring (kick boxing or jiu jitsu) at one minute long each. Funds are raised by sponsoring a fighter for each round they are able to fight. The Institute is hoping to reach its $6,000 target through sponsorship of the fighters.

My husband, being previously motivated by my DRWA talk to support diabetes research, liaised with the owners of CAIA, and I am extremely grateful to Noah and Ron for selecting DRWA as the beneficiary for this fundraiser.

Their decision really excites me, because diabetes research relies on community support to continue. Working in a diabetes research lab, I can see that funds are necessary to promote and develop scientific ideas, and donations from the community are the key to unlock the dream of a diabetes cure into a reality.

So please sponsor my husband Joey Balczer as he literally “fights for a diabetes cure” using this link: http://combatartsinstitute.com.au/100fights2018sponsors/view/form

The event is free to watch, and there will be delicious food trucks on site, so I encourage everybody to attend.

What:
100 Fights in 100 Minutes – Charity Benefit for Diabetes Research WA
Hosted by Combat Arts Institute of Australia

When:
Saturday April 28, 2018, 5.30pm

Where:
341 Oxford Street
Leederville WA 6007

http://combatartsinstitute.com.au/component/k2/item/76-100-fights-100-minutes-2018-perth

Frank: Do you see a cure for type 1 diabetes coming from a particular form of diabetes research? 

Simply answered, the end goal as a diabetes researcher is to find the cure, and as a diabetes patient it is to be cured.

When I was diagnosed in 1989, the Dr told my family that a cure was only “10-15 years away”. As a T1D patient, such claims anger and frustrate me because almost 30 years later, I still have T1D.

However as a diabetes researcher, I see what goes on behind the scenes- the long hours that are put in, the numerous experiments, the lack of funds, government imposed restrictions, the endless paperwork, lengthy clinical trials, etc. Therefore I can appreciate that finding a diabetes cure is a long, tedious, difficult and frustrating process. It literally takes years and years to turn a “lab bench idea” into a clinical trial, and then there is no guarantee that the initial idea will eventuate into a marketable good or service.

It is also crucial to highlight that in order to cure something, we need to fundamentally understand it better. Through research, our grasp on diabetes is constantly improving (just not always at the pace us diabetes patients would like). Incidentally, as technology advances, this will provide researchers and clinicians better ways to test, analyze and understand diabetes, and to use that diabetes knowledge to formulate potential cures.

Consequently, I dont classify one area of research as being more promising than another. It is important to distinguish that given the complexity of diabetes, including multiple environmental and genetic factors, age of diagnosis, and length of disease duration, a future T1D cure may take on many forms. I personally do not believe it will be a “one solution fits all” scenario, but rather, a cure will need to be somewhat personalised, similarly to how we approach current diabetes management options. What works for one person, may not be suitable for another.

I would like to add that finding a way to prevent T1D from developing is as important as ridding the condition entirely once it has developed and I think that this is also an exciting area of diabetes to explore.

Of course, it is difficult to convey these notions with diabetic patients who do not work in the scientific or medical industry, and are exasperated that “nothing is being done”.

Believe me readers, something is definitely being done. Don’t lose hope.

Diabetes Tech: A Cure of Sorts?

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It’s no secret that my cure faith is not very strong. I don’t really live my life expecting, or hoping that my diabetes will be cured tomorrow. This post sparked a fair bit of conversation two weeks ago.

For the record, I define a cure as a means to regulate my blood glucose levels without any action from myself. No finger pricks, no carb calculating, no insulin injections, no treating hypos and no thinking about the whole diabetes thing! Long, uninterrupted nights of pure sleep and leisurely days free from the stress of managing diabetes would be very much preferred.

Although I’m hardly a diabetes veteran, technology has only come in leaps and bounds over the years. And I believe that’s what we are going to have to accept as a cure, of sorts, for the time being.

I believe that the right kind of technology could be a cure of sorts. There’s talk in the Diabetes Online Community of “closing the loop” – i.e. insulin pumps and Continuous Glucose Monitors (CGMs) that “talk” to each other. There’s artificial pancreases in development, and there’s always research surrounding insulin producing cells that could one day be a game changer for us all.

Technology will inevitably make diabetes easier to manage, going forward.

Technology is spectacular. Technology means a lot to many who already use it to manage our diabetes, evidenced here. Technology would be life changing to many, evidenced here and here. Technology provides our health with the best of prospects. And I know that I am extremely lucky to be living with diabetes in 2015, rather than 1915.

But technology is damn expensive, too. And that’s the one thing that worries me.

Research and development into new diabetes technology is costly. Then there’s marketing, promotion and distribution costs. And then of course, the business is a business and needs to make a nice profit from their efforts, too.

But where does that leave the humble young adult from suburbia, working his way through life on a less than spectacular wage? Where does that leave the parent of a young child, managing diabetes on top of family and work commitments? Where does that leave the person living in a developing country, unable to access basic healthcare and diabetes supplies? Did I mention these people are all affected by diabetes?

The sad truth is that diabetes technology, and the closest thing we have to a cure, is still out of reach for many of us. I refuse to adopt a CGM, because I can think of a million other things that I’d rather invest my hard earned money into. I count myself lucky that I am in an independent situation where having a CGM is not a necessity for the time being. For many people with diabetes, it certainly is.

Research and development needs to be conducted with an end game in mind – the consumer. These advances in diabetes technology need to be accessible and affordable to the consumer. Otherwise, I fail to see how we are doing anything to help people living with diabetes. Other than making them feel marginalised, deprived and isolated.

I don’t want to place the blame on any one party. Personally, I’d just love to see government, researchers, diabetes tech companies and diabetes organisations come together to find a solution. I know, easier said than done.

The only cure that I would give everything for, is a proper one. A cure with a one time cost that leaves me forever free of diabetes. A cure that is not reliant on devices, consumables, batteries, cable cords and credit cards. Now that, I would happily give all of my life savings for.

Are you on Twitter? Join the Oz Diabetes Online Community for our weekly chat Tonight from 8.30pm AEDT (GMT+11) by following the #OzDOC hashtag on Twitter.

The Reason I Can’t Advocate For The Cure

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I was already in the midst of a transitional period of my life when I was diagnosed with diabetes. It was my first year out of school. I was driving on my own. I was working my first proper job. I had uni assignments that I had spent way too much time procrastinating on in the weeks before I was diagnosed. I can remember sitting in the hospital cafeteria with my accounting book and pencil one afternoon, desperately trying to catch up. I had exams just a few weeks away. I was about to turn 18. And on top of that, I had a shiny new autoimmune disease to manage and hospital appointments to attend.

Needless to say, there wasn’t really any time for me to stop and take it all in. I didn’t really have time to cry about the fact that I would need to have injections for the rest of my life. I didn’t have time to beat myself up over what I had done wrong to deserve diabetes. There was so much going on outside of diabetes at the time, that I really just had to get on with it.

Since then, managing diabetes has quickly become a part of me. Despite the fact that diabetes is still only a relatively small portion of my life, it feels like I’ve been doing it forever. And most of the time, I hardly even think twice about why I’m doing what I’m doing. The insulin injections, the finger pricks, the terrifying night time hypos, the infuriating morning hypers, the carb counting, glycemic index monitoring, the binge eating, the blood, the sweat and the tears that goes into it all. Doing diabetes is like driving a car with the radio turned up. I can sing along to my favourite song, and chat with the person sitting next to me without thinking too much about the actual driving part.

I have never really stopped and told myself, “I’m doing this because I have diabetes. I’m going to have to do this every day for the rest of my life.” And for that reason, I can’t really say that I live my life hoping for, or expecting a cure for my diabetes.

Dad has been reassuring me since the day I left hospital that there will definitely be a cure. Ten, fifteen years away tops. Definitely in my lifetime. Mum is always cutting out stories from the newspaper about the latest breakthroughs in the diabetes world. We always rush to the television whenever we hear a story coming up on the news at dinner time. People who I chat with in the Diabetes Online Community are so damn enthusiastic about a cure, or finding one. Folks who have lived with diabetes for a lot longer than I have.

Boy, I bloody admire their enthusiasm. I really do. I wish I could get excited about it, but I just can’t. I didn’t even realise people dreamed up cure parties in their minds, because I have never once thought of that day ever coming. In some ways, diabetes seems like too much of a “business” now, to be simply cured and over with tomorrow.

Right now, getting my numbers more consistent during the night seems real. Getting back to a happy place with my diabetes management seems real. Getting a little more fit this summer seems real. Cutting back on chocolate seems real (okay, maybe just possible).

I can write. I can speak. I can advocate. I can raise awareness. I can exercise (hardly). I can eat (always). I can live my life, to the best of my ability and be as happy as possible.

But I can’t advocate for a cure.

But I don’t think I need to, either.

All of you seem to do the job a hell of a lot better than I could. You make the impossible seem just a little bit possible.