Dr Orla Wilson is a chemist and a type 1 diabetic – and when she found out her daughter had her same disease, Dr Wilson wanted better for her child than a life of blood sugar checks and insulin shots.
So she built a better way in her kitchen, and tried it on herself.
Dr Wilson is one of over 1,000 people worldwide who have built their own tiny, wearable computers to automatically check their blood sugar levels and deliver insulin as needed.
The DIY devices have been life-changing for the small group of people who have biohacked their way to a less intrusive way to manage their disease.
All it took was $150 worth of parts ordered online, basic programming, some tinkering in her Baltimore, Maryland home.
The three component devices involved in managing type 1 diabetes – a glucose meter, an insulin pump (or injector) and a monitor to display glucose levels – have evolved and become far smaller over the last several decades.
But they’ve remained separate devices that require frequent attention from a diabetes patient throughout the day.
People born with the autoimmune disease don’t have properly functioning pancreases to break down glucose.
Instead they have to check their blood sugar between four and 10 times a day, and make sure their pump is giving them the right dosage of the vital hormone to keep their levels steady.
For Johns Hopkins University chemistry professor, Dr Orla Wilson, that meant interrupting her own lectures or worrying that her daughter would not wake up in the night to her glucose check alarms.
Dr Wilson has had type 1 diabetes for nearly her entire life.
And for most of those 30-some years, managed it with effectively the same system.
When she found that her daughter, Polly, then seven, was also diabetic, Dr Wilson grew curious and started looking online to see if technology had progressed.
What she found online was a DIY ‘artificial pancreas,’ or OpenAPS rig.
The OpenAPS system first started gaining traction in 2015, and has quickly outpaced the attempts of major medical device companies to bring an integrated system to market.
Programmers Dana Lewis and Scott Leibrand created a homemade device and code to connect a glucose meter, monitor and insulin pump, thereby ‘closing the loop’ of diabetes type 1 management.
They built their device on the tiny Raspberry Pi computer and then, rather than patent their invention, they put instructions and necessary code online, for anyone to use.
The OpenAPS is not FDA approved or regulated, so it can’t be pre-made and sold as a complete system.
Officials at the FDA put out a warning last month about devices like OpenAPS, reporting that they had received a report of someone receiving an excessive dose of insulin while using an ‘unauthorized device’ to send a signal from a glucose meter to an insulin pump.
‘When patients combine devices that are not intended for use with other devices, or when patients use any unauthorized devices, new risks are introduced that the FDA has not evaluated for safety or effectiveness,’ the FDA said in a statement.
There certainly are risks, but people are allowed to make and try their own devices at home, so long as they aren’t selling them.
So that’s exactly what Dr Wilson did.
‘My degree is in chemistry. I didn’t know anything about computer coding or anything like that,’ Dr Wilson told WUSA90.
Nonetheless she set to work programming the credit-card sized computer and assembling the little device that would cut the middle man – her – out of her diabetes management.
With some grit and troubleshooting, she completed her rig, which gathers her blood levels from the tiny glucose meter stuck to her arm, transmits that information to the pump and monitor, displaying Dr Wilson’s blood sugar, and instructing the pump she wars on her hip to dispense the appropriate amount of insulin.
‘Once I had it all working, it just dramatically improved my quality of life,’ Dr Wilson said.
Dr Wilson’s wrist monitor even displays Polly’s blood sugar, so she can feel at ease that her daughter’s insulin levels are right where they should be at all times.
Now, more than 1,303 people worldwide are using DIY devices, which Dr Wilson believes keeps her glucose levels more stable than they’ve ever been.