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Living with Type 1 diabetes, 26-yr-old dancer first in country to use DIY artificial pancreas

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

Written by Anuradha Mascarenhas | Pune |
April 13, 2021 10:40:44 pm
Jazz Sethi with Dr Jothydev Kesavadev.

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

DIYAP consists of existing or old insulin pumps and continuous glucose sensors (CGM) connected to open-source algorithms created by the Type 1 diabetes community itself.

In a new paper ‘Diabetes and Metabolic Syndrome: Clinical Research and Review’, Sethi 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.

Across the word there are more than 1,776 Type 1 diabetes patients who use DIYAP.

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The pace of innovations in diabetes technology has been slow so far. Type 1 diabetes patient communities, frustrated with the slow pace of innovations, 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, Sethi described how she was struggling to manage glycemic excursions and recurrent hypoglycemic events. Looping enabled her to spontaneously open up on how 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 intra-day 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 carbohydrate, 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 and stabilises 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 back up medicines and devices for fear of running out of these items while on trips. Now, the idea of exploring a new city and trying exotic foods is 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, is the first author of the paper titled ‘DIY Artificial Pancreas: A narrative of the first patient and the physicians’ experiences from India’. He told The Indian Express that Type 1 diabetes is a difficult to treat disease, especially in children. There is complete loss of insulin secretion from the pancreas resulting in dependence to insulin to sustain life, he said.

“However the most recommended treatment modality is insulin pump with Continuous Glucose Monitoring. A majority of patients cannot afford and continue with four or more shots of insulin daily. Children and their parents lead a miserable life, pricking their fingers 5-8 times daily to prevent 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,” Jothydev said, adding that despite insulin having been discovered 100 years ago, we are still lagging behind in automating insulin delivery.

But he cautioned that from a clinician’s perspective, DIYAP is unregulated and unapproved. “Their safety and efficacy has 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,” Jothydev said.

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, physicians and patients have advised to use these at their own risk. “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,” Jothydev added.

Co-authors of the study Dr Banshi Saboo (Ahmedabad) and Dr Partha Kar (United Kingdom) said that 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 have said.

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