DIYAPS Users and their Stories
People with diabetes (PwD) have the same disease, but they are different, they do different things, they feel differently: Everyone is an individual and that is what makes the world so colourful and bright. Diabetes is only one part of it. But Diabetes is hard to handle because it feels like there is another individual living with us – different, doing different things and feeling differently, even from one day to the next. PwD can use all the help they can get to manage what they did not ask for. Some of them tried to get help from others and from the idea to create something of their own: a DIYAPS, also known as open source loop system, such as OpenAPS, AndroidAPS or Loop (for iOS).
How do people approach these new experiences and how do they deal with them? The stories that reached us via the DIWHY survey were interesting, short, long, funny, heartbreaking, technical – and absolutely unique and inspiring.
Read the first stories we have chosen to give you an idea of why we are looking for more.
Hard to believe that I finally have normal blood glucose levels!
“I always thought that I would never make it, and now I am happy to have my own loop – my own project !!
In my 35 years with diabetes, I have never achieved an HbA1c value even close to 6, not even within three pregnancies! For years I suffered from diabulimia* – a vicious cycle I never thought I could break! I did break it – but since I have been looping, I feel that maybe I will not relapse. I guess that is because I do not have these enormous blood sugar fluctuations anymore! To me loop is a miracle – after 35 years I can hardly believe that I finally have normal blood glucose levels – I already have congenital diseases and the fear has been huge. For now, I look forward to the future with ease, and from the bottom of my heart I wish that all people with diabetes have access to and can use this technology. I am currently working as a consultant in an endocrinology department and I feel very sorry for some patients because I cannot simply tell them – look, this is how it could work …. Long story short – I never want to be without a loop again!!!”
female, 49 years old, Germany
* diabulimia, also known as insulin purging, is a severe eating disorder. People with type 1 diabetes reduce the amount of insulin needed, blood sugars rise and calories are released through the urine. This can lead to weight loss, mostly due to loss of water because of dehydration. But without the correct amount of insulin, PwD put themselves at risk for severe hyperglycaemia, diabetic ketoacidosis, long-term complications of diabetes or even death.
Why are commercial solutions not as good as DIY?
“For me Facebook had played a key role in my beloved AndroidAPS*. I have been a person with diabetes for almost 19 years and had been “isolated” in this disease. I had no contact with other people with diabetes and I was managing and controlling my diabetes quite well. A couple of years ago, when I was quite low carb, I developed an interest in this way of managing the disease. This is why I joined a Facebook group for low carb people with diabetes. I learned (and still do) lots and lots of things, including the existence of Nightscout.
Sometime later, after setting up my Nightscout** page and asking in a Nightscout group how to get my pump information in it, I found out about “looping”. I was curious, but I heard something about old pumps and so I didn’t think about it anymore. Not long after that, and also thanks to Facebook, I was invited to an event at a hospital where they were talking about closed loop systems. I was truly impressed, and the best thing was to find out that MY pump, which I had been wearing for years and which was covered by my health care system, was now also loopable.
I went back home, and the first thing I said to my family was: “I am going to set up a DIY artificial pancreas”. And so I did. I was hoping that AndroidAPS would give me a bit of peace of mind and would ease the mental burden and reduce the amount of energy required to manage this disease, and it certainly did.
I have been looping for only 4 months now and I am really grateful to all the people that have worked so hard to develop this amazing technology. Also, I still don’t understand why there are no commercial options as good as DIY. And I don’t want to finish without mentioning the importance that the support groups are having to me – both, in helping to understand and set up the system and in managing everyday life with it. It is absolutely amazing to be connected to so many people who are also looping and to give and get support.”
female, 40 years old, Spain
*AndroidAPS – one of the commonly used DIYAPS
**Nightscout – remote monitoring of CGM data and retrospective data analysis and report, widely spread among DIYAPS users
The girl from the field and her spaceship
“November 2015, in some field in Germany
12 years ago I was given the assignment to take care of a sensitive, baby-like thing that is only doing well at temperatures between 19 and 21 degrees Celsius. All the doctors gave me was an umbrella, a flashlight and firewood. Snow is blowing around the baby’s nose, and in the spotlight I can see that the fire has burned it slightly on its feet. Too bad that I cannot use air conditioning.
Suddenly the whole field is flooded by the light of a UFO. The UFO lands, like in some silly science fiction movie. Right next to me, doors open, effect fog, and Rainer* comes out in his space suit. “Wanna come along? You can build a UFO yourself. Do-it-yourself. Hashtag: We are not waiting.”
November 2018, just before diving into the atmosphere of reality
Everything is quiet, a few lights are blinking softly. 20 degrees Celsius. I’ve been up half the night making my UFO, which I will soon be able to control with my phone. Soon I will have to go to work on Earth. I managed to build my first UFO by myself. Yes, me, the girl from the field. Of course, Rainer*, who works down in the engine room of the UFO fleet, always sent me the right links. Apart from Olaf* from the next deck, I have never met anyone in person on this big spaceship in the last two years, but knowing that Scotty* and Nana* are in the cockpit would always give me security. Neither can I solder nor read this “white cryptic on black ground” language, and my spaceship isn’t that beautiful, but it manages to fly. Automatically. With lighting …. better than air conditioning.
Yesterday, in the canteen
I looked around: We have become a very colourful bunch: international developers and girls like me, fathers with toddlers, brothers and husbands, real heroines, invisible warriors and a whole support group. All cyborgs. Everyone with a homemade little spaceship. An amazing fleet. Just before I immerse into the atmosphere of reality, I look through the curtains back to earth. Everywhere I see people with small umbrellas, matches and lighters waving their flags in the fields. We turn on the lights.”
female, 40 years old, Germany
*fictitious names given by the author
Why not use only one device to manage my BG?
Handling a variety of devices for therapy has given me the desire to handle everything on one device that I always have with me anyway: my phone. The technology had been able to make connections between all possible devices via Bluetooth, Zigbee or other protocols for at least 5 years and my pump is also able to communicate via Bluetooth with the control device. So I wondered why it was necessary to walk around with so many devices, if all this could be done by one. The reason for that is clear to me: manufacturers are not interested in whether their equipment can be combined with that of other manufacturers because that reduces their profit.
I’ve searched the market for a long time to see if there’s anything useful, but I found absolutely nothing. My diabetes educator then gave me a hint that there are groups that deal with such a thing. It was a very vague clue because she had to protect herself for legal reasons. But she knew me long and well enough to know that I’m not technically inexperienced and that I can look at new techniques, procedures and tests relatively impartially. In addition, she had already seen that I had written my own evaluation software for my data and the preparation of the required reports.
I’m really grateful for that. Because of this little hint, I found #WeAreNotWaiting instructions on how to bring my diabetes data in the cloud and transform a FGM into a real CGM. It was still associated with various difficulties, because I had to try different things and also made some investments. I needed a new smartphone because my old one could not handle the continuous load of the Bluetooth connection. I needed a smartwatch that I had to attach to the sensor to constantly read the values. I needed something to protect the sensor from being accidentally pulled out, but holding it tight enough to reliably receive the values. Also I “needed” a smartwatch for the wrist, so I didn’t have to take my phone out of my pocket every time. “Needed” is quoted in this case because I could have done without it, but I like to make life as easy as possible – even if that costs me a lot. I worked pretty well with this system for a while, but that was only the first step.
After a few weeks, I received another hint that the connection to my pump had already been reached via the mobile phone. I researched the internet again and found AndroidAPS, which was suitable for it. After some initial difficulties, I managed to play this application on the phone, connect to the pump and the sensor, and in the course of a few weeks to achieve a closed loop.
My sensor´s data now is retrieved every 5 minutes from the AndroidAPS app and according to these values, the pump is controlled so that my sugar level is approximately at the set target value. This system works very well as long as all parts cooperate. It may be natural that the pump disconnects, the mobile phone or the sensor dies – such a system has a lot of interfaces and interfaces always hold the possibility of problems. But it’s a system that I trust a lot because I know how it works. That is not the case with a commercial system of which I am a customer. Because these devices are black boxes, whose innermost is a corporate secret and in which one relies on the fact that everything comes from one source. And this hand collects according to its monopoly position.
However, DIYAPS is completely open, the calculation bases can (and sometimes even have to) be understood by the user and the setting is completely in the hand in which it belongs: the hand of the person with diabetes. People with diabetes are responsible for their lives. They always have been. This does not change with open source loop systems. It only becomes clearer to many. The diabetologist, the diabetes educator and the medical professionals are not crucial for people with diabetes in everyday life. It only matters what they know by themselves, what they use and how they can help themselves. DIYAPS requires people with diabetes to do exactly the same: take self-responsibility for their therapy. And I think that’s a very good thing.
The attention for the important factors (basal rate, carb ratios, ISF) is trained very strongly in the course of setting up a DIY APS. And not from the outside, but from the inside. You have it in your own hands. I always find that very important. Also from the psychological point of view, because then you are safer in everyday life. There is a lot of discussion in the forums. And there are always requests for help, and to that I always reply: read the documentation (usually with list of sources) and understand what you do. That too, I find very positive.
male, 53 years old, Germany