The following is a story from a diabetic named Dominic Nutt.
I groggily and painfully walked down the stairs and saw a bearded man with a large hammer breaking open my small house door.
He shouted at me, “Are you okay? I called an ambulance.”
I am a type 1 diabetic. After working out at the gym, I returned home, injected insulin, ate something, and unknowingly dozed off.
While asleep, my blood sugar level dropped significantly, resulting in hypoglycemic symptoms (a life-threatening condition), causing me to fall into a coma and my body to tremble uncontrollably.
The bearded man is my neighbor. He heard the banging and shouting. Realizing that I might be in trouble living alone, he came to knock on the door and saw me curled up in the hallway through the window.
This has been a portrayal of my life since I was diagnosed with type 1 diabetes in 1983, at the age of 15.
Although this special event was extreme, it was not the only time. Similar incidents have occurred multiple times before and after this one (which happened 25 years ago). My life has depended on kind-hearted people and friends, and after marrying my wife Glenda in 2005, she saved me.
But now, all of this has become a thing of the past, thanks to my self-made “artificial pancreas.”
Currently, like more and more diabetics, I have established a system that uses an insulin pump and a blood glucose monitor, along with a downloaded algorithm, connected to my phone.
This system can continuously calibrate the insulin dosage to manage my blood sugar, and it has improved my life.
Now the NHS (National Health Service of the UK, responsible for providing public healthcare to the entire population of the UK) is piloting a program aimed at allowing more diabetics like me to benefit from similar systems.
Before 2020, I hadn’t used this “DIY pancreas system” and needed to inject insulin up to 10 times a day.
The carbohydrates we eat convert into glucose, and insulin transports glucose to the muscle cells in the body as fuel, while any excess glucose is stored in the liver.
Currently, if you are diagnosed with type 1 diabetes, it is usually recommended to inject two forms of insulin: one is long-acting insulin injected in the morning or evening, and the other is rapid-acting insulin injected almost every time you eat carbohydrates.
You can check your blood sugar using a glucose monitor. Just prick your finger, bring the glucose test strip close to the blood, and you can read the immediate blood sugar value. However, it cannot tell you the trend of blood sugar levels over time.
Maintaining stable blood sugar levels is like walking a tightrope over Niagara Falls; one slip could be fatal.
If blood sugar levels are too high, it can lead to severe dehydration or even coma, as your body tries to rid itself of excess sugar.
If blood sugar levels are too low, the brain lacks “fuel,” and you can quickly fall into a coma. Without timely treatment, it could kill you in a few hours.
The fluctuations in blood sugar can harm our loved ones. A few years ago, one night, I experienced severe hypoglycemia, and Glenda posted about how my diabetes affected her on a social media forum. Reading it broke my heart.
She wrote: “I have been with my partner for 20 years. I see no glimmer of hope; the ups and downs of blood sugar have shattered my life, and my little daughter has also been affected. In the past six weeks, he has had two severe hypoglycemic episodes that required medical personnel to intervene. He is a foot taller than me and can become violent when his blood pressure drops; I need to do everything I can to restrain him until help arrives.”
I have woken up in the hospital several times, hooked up to an IV, with my head stitched. I have also woken up at home, with my wife taking care of me. But those days have become a thing of the past.
For nearly a decade, I have been using an insulin pump—a small electronic device with a thin tube that punctures the skin and releases insulin regularly, day and night.
However, because the amount of insulin it releases is fixed, it often does not match my activity or diet, resulting in many instances of both hypoglycemia and hyperglycemia.
Two years ago, I paired it with a system that continuously reads my blood sugar values through a sensor on my arm. Moreover, with a complex algorithm connected to my phone, it can automatically control my insulin pump and provide me with the correct insulin dosage.
This system was developed by a type 1 diabetic named Dana Lewis in 2013. She “hacked” her glucose monitor and input an algorithm that allows it to accurately calculate her insulin infusion dosage.
Dana Lewis shared this operation in the diabetic community, which collectively developed a system that allows the algorithm to directly control the insulin pump. They call it “closed-loop”. This algorithm has been shared online, and anyone can download it for free.
After a diabetic told me about this, I downloaded the algorithm.
To use this algorithm, you first need an insulin pump, a Continuous Glucose Monitor (CGM), and finally, a phone that can run the corresponding application.
The phone application updates the Continuous Glucose Monitor data every few minutes, predicting the trend of blood sugar fluctuations.The algorithm uses this data to control the insulin pump’s insulin infusion dosage.
According to The Lancet, the system I use is called the “DIY looping and Android artificial pancreas system”. Incredibly, in the UK, among 400,000 type 1 diabetics, only a few use it.
With the development of a commercial version of this system, this situation is changing. The NHS has just launched a closed-loop pilot program involving over 800 diabetic patients.
My doctor, Dr. Sufyan Hussain, a diabetes consultant and senior lecturer at King’s College London, who himself has type 1 diabetes, has studied the system I use and recently co-authored guidelines for the closed-loop system with NHS colleagues, recommending support and use of DIY closed-loop systems.
This initiative could bring new hope to type 1 diabetics.
As Dr. Hussain stated, “The DIY and citizen science approach has been subject to much debate and uncertainty in medicine and law. Our paper clarifies the position of DIY artificial pancreas systems as a safe and effective treatment method in diabetes.”
Hilary Nathan, policy director of the Juvenile Diabetes Research Foundation, also stated, “DIY artificial pancreas systems are clinically considered a safe and effective treatment method.”
It has changed my life, allowing my blood sugar to no longer experience roller coaster fluctuations, and I no longer have to worry about maintaining stable blood sugar through eating or injecting insulin.
With less guessing, there is less stress. Once blood sugar issues arise, my system will alert me in time, and I hope this system can be widely available to diabetics worldwide.
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This article might be just what someone needs. Share it in the diabetic group, your small effort could greatly benefit others.
