Renza Scibilia

Renza is an OPEN team member from – European view – far, far away but nevertheless very easy to hear: In her charming way she gets to the heart of things and insists on clarifying and improving views on a life with type 1 diabetes. There is a lot more to say about her, but lets just hear it from herself:

Hi! I’m Renza and I’m from Melbourne Australia – miles away from pretty much everyone else in the OPEN Team. Nonetheless, I’m pleased to be part of it all – and not just because I get bragging rights when it comes to being exhausted with jet lag whenever we meet.

I was diagnosed with type 1 diabetes in April 1998, and since 2001 have worked for diabetes organisations where I spend a lot of time banging on about the importance of including people with diabetes in each and every sort of activity that involves us – healthcare, diabetes activities and services, research, education. If it’s for us, include us in the planning of it. If I was the tattooing type, I’d have #NothingAboutUsWithoutUs boldly inked somewhere very obvious! Alas, I am not, so I just spend a lot of time saying and writing it to anyone and everyone who will listen or read about it.

I started using Loop in August of 2017. It was truly the most positive thing I have ever done for my diabetes management. Diabetes and I co-exist far more happily since I’ve been Looping because it now takes far less mental and physical energy to deal with. While I can’t say that it’s like not having diabetes anymore, it certainly has made the burden of diabetes the least it has ever been for me. I cannot stress enough how life changing that has been.

As soon as I started Looping, I wanted to tell everyone about it! I wrote about it on my blog (see here), gave updates on my social media accounts, spoke about it to others living with diabetes, and gave one of the first Australian presentations about DIYAPS technology to healthcare professionals. That session earned me the label of being ‘Deliberately non-compliant’ (coined by another OPEN Team member, Tim Skinner) after the HCPs in the room were horrified at what they were hearing. Thankfully, things are slowly changing. And I wear that term as a badge of honour these days!

I was asked to be part of the OPEN Team from the beginning and I am so pleased to be involved. The OPEN Project is the very definition of the #NothingAboutUsWithoutUs philosophy, and I am so proud to be part of something that truly is for and by people with diabetes. I bring to the team my experience of working within a diabetes organisation to navigate the tricky waters of discussing a diabetes treatment option that is not regulated. I’m extraordinarily proud that Diabetes Australia developed the first position statement on DIYAPS where we very clearly state that people with diabetes should have the choice to use this technology and continue to be supported by their healthcare team.

Diabetes is certainly not the most significant thing in my life and it never will be. I love that Loop has given me the chance to focus on the people and activities that are far more interesting and important. My husband and daughter also appreciate how much less diabetes intrudes, giving us more time and energy to do the things we enjoy. We travel a lot, spend a lot of time searching out great places to eat and drink coffee, chase around our pesky and cute pups, explore bookstores and guitar stores around the globe and listen to a lot of music. See? All things that are far, far more interesting than micro-managing glucose levels!

We are very happy and proud to have Renza with us!

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