Living with type 1 diabetes, this dancer speaks of improvement in quality of life after DIY artificial pancreas

Doctors caution not regulated technology but admit to several patients leading a near normal life

Jazz Sethi, a 26-year-old professional dancer from Ahmedabad, who has been living with type 1 diabetes since the age of 13, is the first user of Do-It-Yourself (DIY) artificial pancreas in the country. “My life has totally changed after switching over to DIY pancreas,” she told The Indian Express.

The Do-It-Yourself Artificial Pancreas (DIYAP) consists of existing or old insulin pumps, continuous glucose sensors (CGM) connected to open-source algorithms created by type 1 diabetes community itself.

Globally, there are currently more than 1,776 type 1 diabetes patients using DIYAP. Sethi is the first in the country to use DIYAP and in a new paper, ‘Diabetes and Metabolic Syndrome: Clinical Research and Review‘, has narrated her experience with this breakthrough technology, why she decided to use the system, and how the device has produced significant improvement in her quality of life and management of type 1 diabetes.

The type 1 diabetes community has been frustrated with the slow pace of innovations in diabetes technologies. Patient communities started the #wearenotwaiting movement, eventually resulting in re-engineering existing or old insulin pumps and connecting these continuous glucose monitoring devices, Sethi said.

In her narrative, she described how she was struggling to manage glycemic excursions and recurrent hypoglycemic events. Looping enabled her to spontaneously open up on how the DIYAP has transformed her life. Since her diagnosis, she has been trying several technologies to manage her condition.

“My general quality of life has seen a drastic improvement because of looping. The absence of inter-and intraday glycemic variability itself has contributed significantly to my quality of life. My anxiety and fear of hypos have gone down. For the first time in 11 years, I feel like I don’t have to be obsessed with my diabetes. That is a genuine feeling of relief and satisfaction… I sometimes forget that I have type 1 diabetes,” Sethi said.

“As a type 1 diabetes person who exercises and dances regularly, my dance sessions include bursts of very high-intensity cardio and recovery periods. During intense workout periods, your body breaks down the storage form of carbohydrates, glycogen causing a rise in blood glucose levels. A T1D body will demand an increased amount of insulin to counteract the high blood sugar. Therefore, I used to invariably end up low after my dancing sessions. I used to suspend my insulin but then would see major spikes a few hours later. Now, I use the override settings in the loop to control my sugars. It sets the target range higher than my normal to avoid lows, stabilizes my graph to a great extent. I travel a lot. I had incidents of ending up in bad hypos on long-haul flights. I used to keep backup medicines and devices in fear of running out of these items while on trips. Now, the idea of exploring a new city and trying exotic foods are no more interrupted by erratic sugars,” she said.

Dr Jothydev Kesavadev, founder chairman and managing director of Jothydev’s Diabetes Research Centers in Trivandrum, Attingal and Kochi, and the first author of the paper ‘DIY Artificial Pancreas: A narrative of the first patient and the physicians’ experiences from India‘ told The Indian Express that type 1 diabetes is a difficult-to-treat disease, especially in children. There is a complete loss of insulin secretion from the pancreas resulting in dependence on insulin to sustain life.

“The most recommended treatment modality is insulin pump with Continuous Glucose Monitoring. A majority cannot afford and continue with four or more shots of insulin daily. The children and their parents lead a miserable life, pricking their fingers 5-8 times daily for preventing low sugar or high sugar. Everyone will have a lifetime of bitter experiences to share— sleepless nights, gradual occurrence of abnormal behaviour, poor academic performance. Of course, for those getting better treatment, life is exactly the same or better than someone without diabetes,” Dr Kesavadev said and pointed out that despite 100 years of discovery of insulin in 2021, we are lagging in automating insulin delivery.

He, however, cautioned that from a clinician’s perspective, DIYAP are unregulated and unapproved. “Their safety and efficacy have not been evaluated in clinical trials. Concurrently, patients who opt for these systems cite ‘life-changing’ benefits. So, an ethical dilemma is faced by clinicians working with DIYAP users.”

With the number of patients using DIYAP increasing, it raises serious ethical and medicolegal concerns for clinicians. Since these systems are not validated or regulated by any authorities, the physicians and patients have been advised to use these at their own risks. The use of DIYAP systems is exclusively guided by the patient’s familiarity and confidence with their use. But patients are expected to take proper assistance and advice from their physicians in this regard. Our intention here is not to recommend the use of these systems, but to make an effort to increase readers’ awareness of this technology, Dr Kesavadev said.

Co-authors Dr Banshi Saboo (Ahmedabad), Dr Partha Kar (United Kingdom) admit though not a regulated technology, the open-source algorithms, and the linking devices have enabled several patients with type 1 diabetes to lead a near-normal life. “It is now our responsibility to make this known to the scientific community, since more and more patients will be adopting this in future and hopefully be approved by regulatory authorities all over the world,” researchers said.

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