The story of a Type 1 Diabetic who feared going to sleep…

From The Guardian today–an amazing story which reminded me of my late mother, Molly.
Ma was diagnosed with Type 1 Diabetes in 1955 and on several occasions  suffered hypoglycemic episodes in the middle of the night–when she would slip in unconsciousness.
She was experiencing a “hypo”– falling into a coma caused by low blood sugar–hypoglycemia.
Miraculously my father–asleep beside her–would awaken with the instinct that something was wrong.
He would call the ambulance and accompany her to St Thomas’s Hospital where they saved her life more than once.
Eventually she did die of a fatal heart attack, linked to her diabetes. (And watching my mother’s experiences is what made me take my own diagnosis of Type 2 diabetes seriously.)
Dana Lewis (see below) feared she too might fall unconscious in her sleep without anyone nearby to notice–so with the help of others she has developed a system to monitor glucose levels throughout the night and adjust as needed.
If you have Type 1 diabetes or know someone who does, please take a look:

Experience: I built my own pancreas

Having a computer make adjustments while I sleep is far safer than trying groggily to make decisions in the early hours

Dana Lewis
Dana Lewis: ‘More than 725 people worldwide have now built various types of DIY closed-loop systems.’ Photograph: Annabel Clark for the Guardian

was diagnosed with type 1 diabetes when I was 14. This means my pancreas no longer naturally produces insulin; and without insulin, my blood glucose levels will go dangerously high. The biggest impact was on my sleep. I used to love lying in on weekends. After I was diagnosed in 2002, I had to set my alarm for 7am to take my insulin and eat something, then continue testing my blood sugar and inject myself several times a day.

This process became a little easier when I got an insulin pump, and later a continuous glucose monitor (CGM). The pump continuously infuses insulin into my body, and the CGM sensor can report my blood sugar every five minutes. At night, I relied on the CGM’s built-in alarm to wake me if my glucose passed the threshold that required immediate action; but though I tried several CGMs, the alarms were never loud enough, and they couldn’t be turned up or changed. I talked to manufacturers, but nothing improved. Once I went to college and lived alone, this became a bigger problem; I was increasingly afraid of going to sleep at night.

I was happier and no longer feared going to sleep–but this was still an “open loop” system: it was up to me to take any needed action. A few months later, working with others in the open-source diabetes community, we realised that by adding a small computer and a radio stick to the pump and CGM, we could create a system that not only processed the data, but also sent commands directly to the pump. That’s how we created what is in effect an artificial pancreas, or a “closed loop” system.

The first day I woke up after closing the loop, I was blown away by how much better I felt. I decided I was never going to leave home without it. The equipment can fit in a bag or a pocket. We designed it for safety: if something breaks or I lose it, I can go back to using my insulin pump manually.

Endocrinologists have been interested in our developments, and for me, having a computer make adjustments while I sleep is far safer than trying groggily to make decisions overnight. The system also makes small adjustments every five minutes, rather than large adjustments infrequently, as humans do.

Having created something that changed and improved my own life, and having benefited from others’ open-source work, I wanted to share our work so other people could use it. This is why we created OpenAPS – the Open Artificial Pancreas System project: to make the code, design and documentation available to others for FREE, so they can build a “pancreas” of their own.

More than 725 people worldwide have now built various types of DIY closed-loop systems, and the growing community has continued to improve the code and the systems. Many of us have no medical or engineering training and we work on improvements in the evening or at the weekend. Commercial devices similar to ours are now being trialled and gradually coming on to the market. We’re happy to be helping companies to speed up development. The most important thing is that people don’t have to wait. The fact that others now have the freedom to make that choice is something I’m very proud of.

13 Responses

  1. on July 20, 2018 at 12:04 pm | Reply Myrna Gottlieb

    My cousin’s partner with Type 1 Diabetes had a service dog, who woke him up when there was an episode while he was sleeping. The one time the dog couldn’t do it alone, he ran to the other room and woke up my cousin. The dog was a lifesaver.

    Sent from Mail for Windows 10

  2. on July 20, 2018 at 1:46 pm | Reply Sandy Buchanan (née Smith)

    Thank you Robin for that very helpful article. Fortunately no one in my family has diabetes, but I have several friends who do and some friends whose children do. I will be forwarding this to them.
    You can add educator to your resume.

  3. on July 20, 2018 at 3:40 pm | Reply Gillian Barlow

    Thank you Robin for sharing this, I don’t have diabetes myself, but I have several friends who do. Also I worked in a department which included research into diabetes so I am going to forward your article to one of the researchers and one of the doctors I knew who is now a consultant endocrinologist. It may be that they have read the article, but I think hypos especially when you are asleep are a real challenge and very frightening if you live on your own. I think her description of how much better Dana felt with the 5 minute adjustments and feedback is really encouraging. I know how awful my friend has felt at times.

  4. on July 20, 2018 at 7:33 pm | Reply Helen Wallwork

    This is a very interesting post, Robin. I am,thankfully, not diabetic. However my heart goes out to anyone who is and this use of modern technology should help them and give peace of mind whilst sleeping. Great to see.

  5. on July 25, 2018 at 11:56 am | Reply colincolborn

    Thanks Robin (I loved you in star wars) lol.
    This is great. I’ve had several episodes in the middle of the night when I’d get typos. My wife always knew and woke me so I could take in some carbs. Now after 45 years with type 1 I find I’m having hyper’s rather than typos. Good article, thnx

  6. I congratulate Dana Lewis, her husband and others for creating a system that is so helpful. But the cynic in me wonders how much medical device companies will charge for these once they become commercially available.

  7. on July 27, 2018 at 5:45 pm | Reply Helen Hargest

    I read this article last Saturday and thought it was amazing. It highlights a very real fear for people woth Type 1 Diabetes. Thanks for sharing!

  8. Thanks for sharing this, Robin — what an amazing system! I’ve had type 1 for ~50 years (I met you in Dallas a few years ago and bought your cookbook), and I’ve been living alone for some years now. I’ve always been able to recognize when my blood sugar gets low during the night and to wake up (long-acting insulin before bed keeps it from getting too high), but there’s always the chance that I won’t — especially as I get older. Thanks again!

  9. Thank you for sharing! My son is 10 and got Type 1 when he was 7. We have been able to handle his bs ok with the dexcom, getting up at night or having the dr nail it with the pump the right amount at least while he is sleeping. Though just 2 weeks ago he is not able to sleep or trust us that we will be monitor him just like we have been. He will put alarms on his phone mine every hr or will want to give himself a glucose tab or suspend the pump and even start crying! Can you please share how you have it set up with the pump & dexcom please. He currently has the Ominpod and waiting for it to make it a closed loop like what you are doing now.
    Thank you & God Bless

    • Dear Cynthia–this story touched me and I put it on my blog as a human interest story. I have type2 and am not familiar with the details of these procedures. You should ask your doctor these important questions. It is so hard for him at such a young age and for you as parents. I hope you have an understanding and knowledgable GP. You are so on the case and it’s impressive.

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