This dancer, who lives with type 1 diabetes, talks about improving quality of life after a DIY artificial pancreas.

Jazz Seti, a 26-year-old professional dancer from Ahmedabad who suffers from type 1 diabetes from the age of 13, is the first DIY artificial pancreas user in the country. “After switching to DIY pancreas, my life changed completely,” she said. India Express..

The do-it-yourself artificial pancreas (DIYAP) consists of existing or old insulin pumps and a continuous blood glucose sensor (CGM) connected to an open source algorithm created by the type 1 diabetes community itself.

Globally, more than 1,776 people with type 1 diabetes are using DIYAP. Sethi used DIYAP for the first time in the country and published a new paper.Diabetes and Metabolic Syndrome: Clinical Studies and Reviews‘, Her experience with this groundbreaking technology, why she decided to use the system, and how the device significantly improved her quality of life, and Management of type 1 diabetes..

The type 1 diabetes community is dissatisfied with the slow pace of innovation in diabetes technology. The patient community began the #wearenotwaiting exercise, eventually redesigning existing or older insulin pumps and connecting these continuous blood glucose monitoring devices.

In her story, she explained how she struggled to manage glycemic excursions and recurrent hypoglycemic events. By looping, I was able to voluntarily open up how DIYAP changed her life. Since her diagnosis, she has tried several techniques to manage her condition.

“My general quality of life has improved dramatically thanks to the loop. The lack of daytime and daytime glycemic fluctuations in itself contributes significantly to my quality of life. Anxiety and fear of hypo are gone. I feel like I don’t have to suffer from diabetes for the first time in 11 years. It’s a real relief and satisfaction … I sometimes say that I have type 1 diabetes. I’ll forget, “said Seti.

“As Type 1 diabetes For those who exercise and dance on a regular basis, my dance session includes very high intensity aerobic exercise and a burst of recovery periods. During intense training, your body breaks down carbohydrate stores and glycogen causes elevated blood sugar levels. The body of T1D needs to increase the amount of insulin to combat hyperglycemia. So it was always low after the dance session. I used to pause insulin, but after a few hours I saw a big spike. Now use the override settings in the loop to control the sugar. Set the target range higher than usual to avoid low values ​​and significantly stabilize the graph. I travel often. There was an incident where I got a bad hypo on a long-distance flight. I kept backup medicines and devices for fear of running out of these items while traveling. Now the idea of ​​exploring a new city and trying exotic foods is no longer hampered by volatile sugar, “she said.

The type 1 diabetes community is dissatisfied with the slow pace of innovation in diabetes technology. (Photo: Getty Images / Sinkstock)

Dr. Jothydev Kesavadev, Founder Chairman and Managing Director of Jothydev’s Diabetes Research Center in Trivandrum, Attingal, Kochi and lead author of this treatise.DIY Artificial Pancreas: Story of First Patient and Doctor’s Experience from India‘Said India Express Type 1 diabetes is a difficult disease to treat, especially for children. Insulin secretion from the pancreas is completely lost and you become dependent on insulin to sustain your life.

“The most recommended treatment is an insulin pump with continuous glucose monitoring. The majority cannot afford to continue with more than four insulin injections daily. Children and their parents are miserable. I live a good life and stab my fingers 5 to 8 times a day to prevent low or high glucose. Everyone has a lifetime of sleepless nights, gradual outbreaks of abnormal behavior, poor academic performance, etc. You can share your bitter experience, of course, for those who are better treated, life is exactly the same as or better than those without diabetes, “said Dr. Kesabadev, who said insulin in 2021. He pointed out that despite being discovered for 100 years, he is lagging behind in automating insulin delivery.

However, he warned that from a clinician’s point of view, DIYAP was unregulated and not approved. “Their safety and efficacy have not been evaluated in clinical trials. At the same time, patients who choose these systems have” life-changing “benefits. Therefore, an ethical dilemma is faced by clinicians working with DIYAP users. “

As the number of patients using DIYAP increases, it raises serious ethical and forensic concerns for clinicians. These systems are not validated or regulated by any authority and doctors and patients are advised to use them at their own risk. The use of the DIYAP system is guided only by the familiarity and confidence of the patient’s use. However, patients are expected to receive appropriate support and advice from their doctors in this regard. Our intention here is not to encourage the use of these systems, but to make efforts to raise readers’ awareness of this technology, Dr. Kesabadev said.

Co-authors Dr. Banshi Saboo (Ahmedabad) and Dr. Partha Kar (UK) said that regulated technology, open source algorithms, and link devices allowed some patients with type 1 diabetes to lead near-normal lives. I admit it. “It is now our responsibility to inform the scientific community of this, and we hope that in the future more and more patients will adopt it and be approved by regulators around the world,” the researchers said. ..

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