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When diabetes is your life, DIY on glucose monitors, pumps help

Diabetes 1, or even Diabetes 2 diagnosis is a shock to the system. But from online support groups to "bionic pancreases," there are ways to manage the incurable disease.

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One sunny day last July, I was chatting with my cousin Kathryn as we watched her daughter Ruby, now eight, dashing around the garden of my childhood home in Manchester, England, a cute red and white polka-dot bag slung over her shoulder.

It was an idyllic scene, one that stands in stark contrast to just six months earlier, when Ruby, who had exhibited few symptoms other than inordinate hunger and thirst, was rushed to hospital and diagnosed with type 1 diabetes. What followed was a six-day baptism of fire as Ruby was stabilized and forced to deal with her mortal dread of needles, while Kathryn and her husband underwent sleepless nights and a crash course in endocrinology.

"It was like having a new-born baby, but it's even harder, because you weren't expecting it," she told me. Life suddenly became about monitoring, calculating, injecting, and planning around eating, exercise and school -- all on no sleep and all totally out of the blue.

That cute bag that Ruby (name changed to protect her privacy) carries with her at all times? It houses a Dexcom glucose monitor and a pack of glucose tablets, which work in conjunction with the sensor attached to her arm and the insulin pump plugged into her stomach. The final item in her bag was an iPhone 5S.

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The content's of Ruby's bag.

Kathryn Bond

It's unusual for such a young child to have a smartphone. But Ruby's iPhone, which connects via Bluetooth to her Dexcom monitor, allowing Kathryn to read it remotely, illustrates the way technology has transformed the management of diabetes from an entirely manual process -- pricking fingers to measure blood sugar, writing down numbers in a notebook, calculating insulin doses and injecting it -- to a semi-automatic one. It removes a lot of the guesswork involved with the timing and calculation of insulin doses by providing detailed, almost real-time monitoring of blood sugar levels.

Diabetes is not a small problem. Nearly 10 percent of the US population -- just over 30 million people in total -- are affected by the disease. Of those, 1.25 million Americans have type 1 diabetes, which puts them at risk of slipping into a fatal coma at any time and for which there's no cure. Instead, patients must treat and manage the disease, in which the body produces little or no insulin to regulate blood sugar levels, as best they can every day for the rest of their lives.

For all people with type 1 diabetes -- often diagnosed in childhood -- and for some with type 2, this means injecting themselves with insulin on a regular basis.

It was Ruby's case that inspired me to look into diabetes and how technology has made treatment less of a pain. Blood sugar levels can now be read almost in real time by devices such as continuous glucose monitors and insulin supplied via a pump continuously fixed to the body.

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A diabetes pump means no injections, but does mean carrying the tech round your waist at all times.

Kathryn Bond

But tech is not a complete panacea.

To start with, the most advanced tech isn't always available to everyone, and millions around the world don't have access to even basic gear like blood-glucose testing machines, according to Elizabeth Rowley, founder of charity T1International. It's led to some people "hacking" their equipment to take advantage of new capabilities.

It also adds new layers of complication to an already complicated disease.

"Technology is great as it gives us lots more information, but it doesn't take diabetes away and it doesn't take the management of diabetes away," said Libby Dowling, who is senior clinical adviser at Diabetes UK and who has 11 years of experience as a children's diabetes nurse.

Pumps, which negate the need for injections, can also fail as the areas they're attached to gradually become insulin-resistant, meaning they have to be changed, which takes time. Having reams of data accessible might give an accurate snapshot of what's going on in the body, but it also increases the number of decisions you need to make. Real-time availability of the data can lead some parents to compulsively check on their child's blood sugar, in the same way many people do with social media.

"Parents find it really reassuring knowing that they can check in on what their child is up to and what their levels are and all that kind of thing," said Dowling. "But it can also increase anxiety."

When Ruby was diagnosed, Kathryn was warned by doctors not to be a perfectionist about monitoring and decision making. "The more tech you have, the more complicated it gets," she said. "We have chargers coming out of our ears."

And yet, she tells me: "The good hugely outweighs the bad for us -- by a huge margin."

#WeAreNotWaiting

Even in Australia, where Kathryn's family is based, the wait for new tech to actually become available is frustrating for well-informed parents who want and can afford the best possible care for their children.

One example Kathryn gave me is the lack of ability to connect an Apple Watch's cellular capability to the Dexcom G5 glucose monitor (it can only be used with Bluetooth via an iPhone.) Ruby's older sister, Lucy (name also changed), was diagnosed with type 1 diabetes eight months later, and uses the Dexcom G5, too. Being able to monitor the girls from her wrist is high on Kathryn's wish list of improvements she'd like to see in diabetes tech.

There are people who are unwilling to wait, and who embrace unorthodox methods. (You can find them on Twitter via the hashtag #WeAreNotWaiting.)

The Nightscout Foundation, an online diabetes community, figured out a workaround for the Pebble Watch. Groups such as Nightscout, Tidepool and OpenAPS are developing open-source fixes for diabetes that give major medical tech companies a run for their money.

Mission: Bionic Pancreas

One major gripe of many tech-enabled diabetes patients is that the two devices they wear at all times -- the monitor and the pump -- don't talk to each other. For many years, the community has been waiting for a "closed-loop" system, often referred to as an artificial pancreas, through which the insulin pump could respond automatically and in real time to the monitor's readings.

For as long as pumps and sensors fail and need changing at the drop of a hat, diabetes will never be a hands-off disease to manage, but an artificial pancreas is basically as close as it gets. The FDA approved the first artificial pancreas -- the Medtronic 670G -- in October 2017. But thanks to a little DIY spirit, people have had them for years.

Take Dana Lewis, founder of the open-source artificial pancreas system, or OpenAPS. Lewis started hacking her glucose monitor to increase the volume of the alarm so that it would wake her in the night.

From there, Lewis tinkered with her equipment until she created a closed-loop system, which she's refined over time in terms of both hardware (she uses a Raspberry Pi) and algorithms that enable faster distribution of insulin. It has massively reduced the "cognitive burden" on her everyday life, she told me over email. She no longer has to constantly think about diabetes before, during and after everything she does.

Hacking a glucose monitor is not without risk -- inaccurate readings, failed alarms or the wrong dose of insulin distributed by the pump could have fatal consequences -- but as with much of the highly inexact science around diabetes management, some people believe it's worth the tradeoff. Lewis and the OpenAPS community encourage people to embrace the build-your-own-pancreas method rather than waiting for the tech to become available and affordable.

They aren't alone. JDRF, one of the biggest global diabetes research charities, said in October that it was backing the open-source community by launching an initiative to encourage rival manufacturers like Dexcom and Medtronic to open their protocols and make their devices interoperable.

"This would allow seamless, secure connectivity between devices -- much as your cell phone and personal electronics are able to connect wirelessly," the charity explains in a blog post.

Just like every tech option for diabetes, choosing to use a closed-loop system is a decision heavily dependent on personal preferences. "An automated insulin delivery system is a different way of dealing with diabetes," Lewis said. "You have to learn to build trust, and learn what to do differently, and how to use the tools to best help you achieve your goals."

Kathryn told me it's not something she'd be willing to experiment with for her daughters, but she understands why people do it. "If it were me [with diabetes], I'd be straight on that," she said.

Although experts like JDRF Research Director Daniel Finan believe the DIY route is safe, those methods won't have gone through rigorous tests performed by regulators, which means they remain in the Wild West territory of tech for now. Gradually this is changing. Along with Medtronic, US-based startups such as Bigfoot Biomedical and Beta Bionics are attempting to bring officially regulated artificial pancreases to market.

Lewis is encouraged by JDRF's initiative and can see a day commercial devices will catch up to what the DIY community is doing, but it's a question of time.

"I think it's likely going to be the second or third generation of these devices that get to where we DIYers are today, and especially around the needed interoperability and flexibility to really allow an individual to have this technology fit their particular lifestyle," she said.

Baby steps to better lives

In the meantime, even incremental updates to existing tech have the potential to make massive differences in the lives of people with diabetes. Dexcom last month introduced its latest device, the G6, which is the first continuous glucose monitor that doesn't require calibration via a fingerstick, a needled device used to take diabetes measurements.

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The update to the girls' G5 monitors won't require fingerstick calibration.

Kathryn Bond

That's a huge deal because you have to prick your finger with the  fingerstick to get the measurements -- multiple times a day. Continuous glucose monitors have reduced the use of fingersticks, but until the G6, monitors still required calibration, sometimes up to twice a day.

"When it comes to the treatment of diabetes, the most dreaded thing is the fingerstick," said Dexcom CEO Kevin Sayers in an interview. "They just flat out hurt."

Dexcom is the first company to successfully make sensors that don't need this constant recalibration.

"Think about if you're the parent of a child," he said. "You've got to wake up in the middle of the night and stick your child's finger two or three times." The consequences aren't just that it is uncomfortable for the child, but leaves both the parent and child exhausted.

All diabetes, all tech trade-offs, all the time

Sleeplessness is something Kathryn and her husband experienced a lot in the early stages of Ruby's diabetes diagnosis.

Using Dexcom's monitors with an alarm that goes off if glucose levels go haywire has helped remedy this. It's one of a list of reasons she favors it over other monitors, even though the girls have a Medtronic pump, which means she has to have two apps on her phone (and on theirs) and two sets of data to analyze.

A year into life with diabetes, Kathryn can tell me the pros and cons of practically every monitor out there, as well as their compatibility with pumps and infusion sets (the girls each prefer different ones) or injections. Whatever combination of tech you choose, she said, "it's always a trade-off."

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The girls prefer different pumps, which they also like to wear slightly differently.

Kathryn Bond

Finding the right combination of the tech for each of the girls has been a trial-and-error process that will continue to evolve as the girls grow older, face new life challenges and develop different preferences about how much technology they're willing to be constantly hooked up to.

Through Facebook groups she belongs to, Kathryn has heard about the different ways this can play out from parents of other children with type 1 diabetes who've trodden the path before her. A type 1 diagnosis in the family is a shock to the system in many ways, but the help of online communities can prevent it from being quite so isolating. They're a source of tech support, but also of "huge kindness," Kathryn told me.

So far, Lucy and Ruby have coped "fantastically well," but as they grow up, they'll also have to start to take more responsibility for managing the disease for themselves. It will relieve some of the work Kathryn has to do -- she knows parents who've given up work following a diagnosis, it's so labor-intensive. But for the girls the burden of monitoring and controlling the tech as well as physically carrying it everywhere they go will not be a light one to shoulder.

"You are constantly thinking diabetes, because it impacts every single thing you do," said Kathryn. "It's the constancy of it, and it never goes away."

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