Ben Ross: Technology as a Game Changer for Type 1 Diabetes
Ben’s story starts when he was in his early 20’s, having left New Zealand to travel abroad and play rugby. Looking back, he recognises that he had all the symptoms of diabetes, but his rugby training meant his body was able to regulate the excess sugar building up in his bloodstream. As a result, Ben went undiagnosed for about 18 months. During this time, he was experiencing blurry vision, weight loss and excessive thirst, but hadn’t realised they were related. Eventually his body was unable to cope, and the next thing Ben knew, he was waking up in a German hospital in a diabetic coma.
Type 1 diabetes is the result of an autoimmune response in the body where the pancreas stops making insulin. It most often presents in children, although it can develop at any age. Ben was diagnosed at 23 which is older than many type 1 diabetics. Since his diagnosis, Ben manages his type 1 diabetes with daily injections of insulin, sometimes up to 4 or 5 times a day. This is different from type 2 diabetes, which is more common, develops over the course of many years, and can usually be managed through lifestyle changes.
On a day-to-day basis, Ben finds that diabetes has a significant impact on his life. As he explains it, “there is a fair amount of admin that needs to be done”. Ben always needs to have insulin on hand, as well as quick release carbohydrates in case of a sugar low. “Having to count carbs and try to be as accurate as possible with insulin intake, and when to take it, can get a little bit tedious.” he says. There are so many factors that can change how much insulin the body needs, so in addition to tracking what food he is eating, Ben also needs to consider how much activity he’s doing along with other factors such as stress or being sick. If he gets it wrong and has a sugar low, Ben needs to be able to get sugar quickly or risk falling into a diabetic coma. However, if his glucose levels are sitting too high, this is dangerous for his long term health, as it can damage cells with severe consequences such as blindness. There are no physical symptoms of high glucose levels, so Ben needs to constantly monitor and adjust for this.
Injecting in public can be daunting, says Ben. “There are times where you feel a little self-conscious having to inject yourself in public and potentially asking people if they are ok with that. Some people really freak out, so you need to be prepared for that. Often you have to explain what you are injecting and why, because a lot of people don’t really understand what type 1 diabetes is.”
The treatment of type 1 diabetes has changed significantly, even during Ben’s time. While insulin remains the key treatment, the way it is formulated, administered, and monitored has improved. When Ben was first diagnosed, he had to prick his finger 5 or more times a day to get his sugar readings. Now, with the introduction of CGM’s (Constant Glucose Monitors), he can track blood glucose levels in real time. No more finger pricks and testing kits – the data is sent to an app on his phone. This has made a huge difference to the ease of measuring glucose levels, and also the accuracy. His phone will alert him if his levels need adjusting and he can react immediately. From a practical point of view, Ben says having an app on his phone is liberating. Previously he’d have to take a testing kit out with him, which required a bag (not always practical when going out with friends), but now he can just take a phone.
While this technology is a game changer for Ben, he says it isn’t funded in New Zealand and can cost hundreds of dollars per month. He worries that this is prohibitive for some families, which is upsetting when the technology has been such a game changer for him personally.
In terms of the ways insulin is delivered, the traditional method is by injection – often many times per day. However, insulin pumps can now deliver insulin in the correct amounts throughout the day, more closely resembling the body’s natural insulin release. Closed-Loop Systems combine insulin pumps and CGM technology to automatically adjust insulin delivery based on real-time glucose data. While Ben doesn’t use a pump himself, he sees how helpful it would be for others, especially children, as it takes a lot of the monitoring and calculating out of the process. But once again, says that it is not funded, so many people with diabetes miss out on technology that can make a big difference to their everyday lives.
Ben has some hard-earned advice for anyone who has been recently diagnosed with type 1 diabetes. He says, “Get the best technology you can afford to help reduce the burden. Start documenting what you are doing each day so you can figure out what works for you while you get used to things.” While it is a shock when you are first diagnosed, Ben says “Remember, it’s not the end of the world and you can still do normal things if you work out how your body and sugar levels react. There will be ups and downs, but maybe just have a checklist for the first few months while you form the habit of what becomes part of the day to day.”
He also has some advice for friends, families, and coworkers. He would like people to know that type 1 diabetes isn’t something you have a choice about. It hasn’t been brought on by poor diet or life choices, and it can’t be cured. He suggests keeping an eye out for any change in behaviour for people with diabetes, as it can be a sign that things are changing for them. Diabetes can also have an effect on mood, so having understanding around this is important.
All in all, Ben finds he leads a full life, and works around his diabetes so he can still do all the activities he loves. He believes knowledge is key, understanding diabetes and the options to support self-care and treatment are vital.
If you’d like to learn more about type 1 or type 2 diabetes, the Diabetes New Zealand website is a great place to start. If you have concerns about your own health, contact your GP for advice.