There are so many incredible diabetes advocates around the world, and today we’re thrilled to introduce you to D-peep Ashley Ng in Melbourne, Australia!
For those who haven’t met Ashley online (@HangryPancreas), she runs a platform known as the Beta Change Network that works to share advocates’ stories and help connect those who are trying to do great things in different parts of the world. Ashley also has a unique personal diabetes story, in that she’s living with the lesser-known type 1b form. Here’s our recent video interview with the 20-something overseas:
DM) We always like to start by sharing your diabetes diagnosis story…
AN) I was diagnosed at age 19 back in 2013. It wasn’t a typical diagnosis, and I didn’t have any of the usual symptoms. I went in with a sinus infection, and in seeing a higher blood glucose my doctor says, “You definitely have type 2, because you haven’t passed out or been to the hospital. But we’ll send you to an endocrinologist just to be safe.” The endos were really too busy to run any initial tests, so they sent me home on (metformin) tablets to see how that would go. It didn’t work well, and after about six months they put me on insulin. At that stage, I still had no idea about diabetes and was still in a state of shock. The common misconceptions, with T2 being an older person’s condition, and only young kids got type 1, were all a part of it. That was really hard for me to comprehend.
So what did you do?
I went online and tried to connect with different groups, but that was difficult too. I thought maybe going into type 1 groups they would have experience with that and be able to help with insulin and what I was going through. But that’s when I hit my first set of barriers, because people would say, “You can’t join this group because you have a different type of diabetes, and you’re not welcome.” I was really shocked by that animosity.
I decided to start my own group, because that’s what any lonely teenager would do, right? So I started writing my own blog, and started finding other people who were welcoming. It was quite surprising, sad, and heart-warming that there were other people out there like me who were young and didn’t fit into that “type” box that people know. Eventually, I found a healthcare team that was willing to help me figure out what type of diabetes I have and advocate for me in getting an insulin pump. Eventually, I got there in the end. We still don’t know what type of diabetes I have, though, so we just lump it into type 1b.
Can you tell us more about type 1b (idiopathic) diabetes?
Practically, it’s really the same as type 1 in needing insulin and checking your blood sugars. The differences come down to the physiology between T1 and T2, and things like that. It’s not a clear-cut type 1, where the diagnosis criteria is pretty simple: you have to have the autoimmune and genetic markers, and you pretty much have zero C-peptide that you’re producing. I still product a little bit of insulin, but don’t have any autoimmune or genetic markers that we know of. Really, we don’t know what path my body will go as far as disease progression and risk of diabetes complications, whether it will be more like type 1 or type 2. There are a lot of unknowns. So it’s been an interesting ride, but it really boils down to me not producing enough insulin so I take extra insulin.
I was always trying to get inclusivity, because I felt unwanted at the time in the Diabetes Community and wanted a place to connect with others.
How did you begin to find people online who were welcoming?
It was through Renza here in Australia, who blogs at Diabetogenic. She said there was this non-stop chat about diabetes there… I had no idea how to use Twitter at the time. But she got me on there, and before I knew it I was connected to so many people in various hashtag chats — #OzDOC (in Australia), #DSMA, #gbDOC (in Great Britain), and more. I loved it. And that is the boost of peer support that I needed, to push me toward being empowered in my own health but also to advocate and help other people with diabetes.
Wow, power of the DOC! Where did you go from there?
It was through all of that online that I applied and was selected to be a part of the Young Leaders Programme through the IDF (International Diabetes Federation). That was a platform where we could meet diabetes advocates from all around the world for the first time. That was eye-opening and quite inspiring, and you could make life-long friendships out of that. With that, a group of us were spending a lot of time in online meetings and we wanted to do more, but were limited by the boundaries of the IDF Young Leaders group – some of what we envisioned didn’t align with what the IDF wanted. A group of us came together to form Beta Change, to do more with what we’ve already got.
OK, let’s talk about the start of Beta Change…
We wanted to support diabetes advocates in a way that made sense to us, in terms of providing online training and support in a way that was flexible and able to change as people needed it. We created a platform that could be shared, and not controlled by a big organization or needed to wait on people to approve things in processes that were in place. So in starting Beta Change, we were able to do that and work on our own side projects, and in time were able to share stories on our platform without restrictions.
Even if someone didn’t have diabetes, we could share their story if it helped our community. We love being able to do that, sharing that it’s not only people with diabetes doing amazing things, but that our industry partners and healthcare professionals, and parents, partners and others are all making a difference. It’s something that has driven us.
We are still in the growing phase and exploring what our niche really is. We kind of launched on World Diabetes Day in November 2016, participating in the 24-hour #DSMA tweetchat. That was our, “Hey guys, we’re here! We don’t know what we’re doing yet, but we know we want to do something!” So it’s been about two full years or so, that Beta Change has been around.
Sounds like advocacy training is big part of Beta Change. What has the group done so far?
We have a website that’s our central platform where we share stories and connect people, as well as through social media. We also have had virtual roundtables where we’ve done 15 to 20-minute live chats on video and Facebook, talking about ideas on different topics and how they happened. Those were hard to pull together with people in different time zones, so now we’ve started doing “mini-sodes” where we just talk to different people. We also have a place cards series, where people can write 300-400 words about what they’re doing in the community. It can be as simple as, “I graduated college while managing my diabetes,” because not everyone wants to climb mountains or run across a country. We share stories on all types of activities from around the world.
What we also want to do is an online training module for diabetes advocates. We’re developing content on various things like starting your own diabetes camps, or how to run an online support network, and so on. Many of us are juggling different things, so as we pull this together, we’ve started a Slack channel for diabetes advocates to connect online and chat about exactly what we’d like to get out of these training workshops. We chose Slack because Facebook is a limitation for some people, and on Slack we can navigate time zones where people live.
It comes down to trying to include everyone as much as possible and connecting people. We’ve been talking about starting a Beta Change blog, too, chronicling the backend of starting a diabetes organization with the hardships and everything that goes into it. We’re looking at how to get started.
How many people are involved in creating Beta Change, and does it have an official non-profit structure?
We have about 7 team members total: three of us in Australia, one in Singapore, and two from America. There is a lot of learning, and that’s probably why we haven’t taken the step to officially form an organization at this point. We know how much work is involved, and we know the team’s 100% commitment for that. But with everyone already having full-time jobs and doing side projects, it’s difficult.
For your day job, you actually work in the healthcare space. Can you tell us how you got into that?
When I was diagnosed, I was in my second year of university. I was studying to get a very general Health Sciences degree because I knew healthcare was an area I wanted to be in — after realizing that music, as my backup plan, wasn’t going to cut it. (laughs)
I also loved food, so that’s how I decided on nutrition and looking into being a dietician. But I was also interested in psychology and figuring out why things happen the way they do, what drove people to do things a certain way as far as their behaviors. That marries up really well as far as nutrition and in diabetes especially. Everything kind of fell into place. I realized that research is where I wanted to be at, because it allowed me to explore the why and ask questions. It also grounded me and reminded me of why I was doing this research. It’s stuff that people with diabetes already know, but it’s learning and gathering the evidence. Without the evidence, healthcare professionals don’t seem to recognize it. So for me, it’s about filling in those gaps to help healthcare professionals understand this better and why we do the things we do in living with diabetes.
I ended up in getting my Master’s in dietetics and am a now a Registered Dietician, and after that started my PhD in research.
And your research focus is mHealth, correct?
Yes. At the time, I was really involved in the Diabetes Online Community at different levels and involved in IDF. So I thought about looking at online peer support and how that could be weaved into mainstream healthcare. That evolved into looking at digital health, online peer support, and transforming healthcare in Australia so that this can be recognized to help young adults with diabetes who don’t have the mainstream support like kids with type 1, or older adults with type 2. Those in-between ages, there’s not much catered to us and that’s where it is most important. That’s where my research has been focused.
I finished that up last year, and am now a lecturer and researcher in Australia continuing my work and also working with the iDOCr group that includes leading diabetes educators like Deb Greenwood and Michelle Litchmann, and being able to give back to the community professionally in that area.
OK, we have to ask: what about that original plan to go into music?
When I was in high school and played the clarinet, one of my dream jobs was to actually play for musicals around the world. I didn’t quite make it… I stopped a couple years ago, because I was just doing too much and had to give something up. I figured without practicing much, that dream wasn’t going to happen and music had to go. But I do enjoy playing for fun now.
Thank you so much for sharing your story, Ashley! We love what Beta Change is doing and look forward to seeing what comes next.