For the past decade, insulin has been essential for Nandana, a Bachelor of Science student from Wayanad. Her life finally started to turn up thanks to actor Suresh Gopi, who gifted her sensor-enhanced insulin her pump worth Rs 6 million. And she started working on her body yesterday. Under the supervision of her Dr. Jothydev Kesavadev, director of the Jothydev Kesavadev Diabetes Research Center, Nandana’s health is still being monitored regularly. But Nandana still feels the pain when she thinks of the thousands of people still struggling because of type 1 diabetes.Nandana and Shana, mothers of two diabetic children, We speak to Manorama online about our experience and our desire to make this facility accessible to all who suffer from type 1 diabetes. Jothydev Kesavadev also joins the conversation.
“Yesterday was an unforgettable day in my life. I was finally able to find a solution to the problem I was facing since the 5th std. At home, I was always a concern for everyone, especially when I started schooling.It was hard to predict when my blood sugar levels would fluctuate. If my parents are worried about me, I can imagine the anxiety of parents who have a child with type 1 diabetes,” said a Bachelor of Science student from Wayanad.
“Type 1 diabetics always dream of sensor enhanced insulin pumps. she adds.
Insulin pump is the only way
Honestly, I can’t help but wonder if this is real or a dream. Because the 60,000 rupee insulin pump can only be obtained in a dream. I am forever grateful to Sir Suresh Gopy and his family. It was through the secretary of the Type 1 Diabetes Association that I learned that Suresh Gopy sir was in Wayanad and went to see him. My only thought was to share my problems with him and get help in return. When he heard about my illness, he immediately promised me an insulin pump.
Barely six months after our meeting, I got a call from Thiruvanthappuram wondering if I could meet him there. I was ecstatic.
Doesn’t it hurt?
I was born with type 1 diabetes, but was not diagnosed until I was 10 years old. It begins with acute stomach pain and urinary tract infection. I was dehydrated and had difficulty walking. It was after a urine test that I was diagnosed with type 1 diabetes. Insulin injections started that day. At first, I was taking insulin shots twice a day. But when his blood sugar got out of control and climbed over 400, I started taking his 5 doses of insulin a day. I was taking insulin shots with the help of teachers and students. I had to keep it in the fridge, so I kept it in packets of ice cubes.
I was wondering if my friend was in pain while taking insulin shots. It’s hard to drink five times a day, but I just laughed. Because I knew I had no other choice. Both my arms are covered in marks now. There’s some comfort in the idea that you’ll be in less pain after you get your pump.
There are thousands of children like me with type 1 diabetes in this world. If they had received a pump like I did, their pain would have been lessened. Everyone would feel safer if everyone had access to a sensor called her SGM,” he says.
How do you send your child to school in this condition?
Shana is currently out of school with her 8-year-old daughter. It’s not that she’s messy, but even leaving her class she’s constantly thinking about her blood sugar fluctuations, after all, it only takes her seconds to change things. I am more concerned about her health than her education. For that alone, she protects two children who suffer from diabetes. There are many moms like me. It’s hard to put into words our misery,” – says Shana.
“One of the main concerns with type 1 diabetes is the unpredictability of blood sugar fluctuations. Two days ago in Kottayam, my child’s blood sugar level dropped at 5am. I got up and bit my tongue.If your blood sugar is going down, be sure to give him glucose, but if a child is given glucose during a seizure, he will not be able to drink it. The child bit his mother’s finger while scooping it into his mouth.This is the problem facing children with type 1 diabetes and their parents, who are still in the ICU.
How can you forget Adarsh, 20? It’s been exactly a year since he left us. He returned with his parents after visiting the hospital. He sat between his parents in the car and fell asleep.He was asleep, so his parents didn’t wake him up. When they arrived home and started waking him up, they found him unconscious. He was hospitalized and put on a ventilator for two days, but he could not save his life. News like this can be very stressful for parents of children with type 1 diabetes.
safety is the key
It’s hard to explain to anyone how it feels to be a parent of a child with type 1 diabetes. But Kerala people need to understand our problem and stand by us. Every time a needle is injected into a tender arm, it is painful for a child. But it must be done for their safety.
The plight of children is intolerable. Many mothers have considered suicide when they see their children’s plight. I have a mother who experienced depression during that period. Even a slight fever can cause diabetes in these children to spiral out of control. Their mental state in this situation is even more precarious than in their daily struggles. They had an alarm going off every hour before they went to bed. Some moms have two or three phones ringing because they’re afraid they won’t go off.
Don’t destroy their childhood.they need security
Shana says that Nandana’s insulin pump is the result of the efforts of all members of the Type 1 Diabetes Welfare Association.
“It would be a relief if they could give the kids tubeless pumps and the adults tube pumps. Tubeless pumps are available in America. It’s not a problem for her because she’s an older child, but it would be hard for little ones to play around her waist.It’s also that their childhood has been affected. When we heard that there was such a pump in Kerala, we thought of our powerlessness to give it to our children.
In the UK, US and Germany, there is technology to check blood sugar levels while sitting at home. We also provide free insurance. But here the children are not even aware of the sensors. If such facilities were available, we would have been more than happy to send them to school and monitor their blood sugar levels from their homes or offices. . We hope that the issue of type 1 diabetes will be brought to the attention of state and central governments to provide sensors and insulin to her pump,” she says.
As a first step, the Type 1 Diabetes Welfare Association is organizing a fund for children instead of holding an Onam festival this year.
Type 1 diabetes is not uncommon
India has the highest number of people with type 1 diabetes in the world. America is her second and Brazil is her third. Previously, India was considered the country with the fewest type 1 diabetics for her. But now India is her type 1 diabetic capital. As such, it cannot be classified as a rare disease, according to Dr. Jyothidev Keshavadev. According to current research, there are about 2 million of her type 1 diabetics in India. This disease has been prevalent in Kerala for 100 years. Nearly 4000 of her young people under the age of 20 have her type 1 diabetes, according to a survey. There is no clear registry for this.
Insulin pumps for diabetics have been in use in India since 2004. Insulin passes through a subcutaneous pump. It enters the body in the same way that the pancreas produces insulin. Therefore, insulin pumps are considered superior to other regular injections. Still, the inability to measure fluctuating glucose in the body remains a problem with type 1 diabetes.
With a Rs 60,000 pump, the monthly cost will be Rs 2,000.
Nandana, who recently got an insulin pump, had constantly fluctuating blood sugar levels. It’s been only a year since Nandana’s 780G equipment came to India. This allows the detection of fluctuating glucose numbers 30 minutes in advance. Insulin levels alternately rise and fall before glucose levels begin to fluctuate. Insulin is also automatically turned off to prevent blood sugar from getting dangerously low. Insulin is needed during sleep, and insulin is secreted on its own when blood sugar levels are high.
Suresh Gopy gave Nandana an insulin pump worth Rs.6 million. But her 3-4 people in the hospital have to be on duty 24 hours a day for her 3-4 months to check things like cleaning and deploying. All these services are provided free of charge. But they have to spend 20,000 rupees a month. However, we are informed that society will somehow handle the funds.
most useful for children
Glucose remains normal 40-50% of the time in infants. That’s the nature of type 1 diabetes. Now when you look at your average glucose, even if your A1C is around 7 or 8, that’s just an average of your level of variation. In any case, the specificity of the new device remains 80%. After learning to use it perfectly, there is a 90-95% chance that it will remain normal.
It would be a great blessing if all children could receive this facility. All mothers have sleepless nights. All of them wake up at intervals of one or two hours with the help of alarms. Some people wake up even with sensors. Because only very expensive sensors have alarms.
A disease that has been ignored for years
Covid has increased the number of people suffering from type 1 diabetes. Type 1 diabetes is neither a genetic disease nor a lifestyle disease. This happens to children, not the children or their parents’ fault. As the body’s immune system works against us, the insulin-producing beta cells in the pancreas are destroyed and stop producing insulin. 8-10% have type 1 diabetes. There was a time when a parent was hesitant to reveal her child had type 1 diabetes. So it didn’t get much attention. Otherwise, I would have had a notable disease 40 years ago,” says Dr. Jothydev.
Type 1 is an autoimmune disease caused by several viruses. It’s a disease caused by a virus, so if her 1 in 100 child has any kind of fever, she may lose beta cells in her pancreas. Antibodies can prevent diabetes. But when suddenly another virus like this enters the body, diabetes develops.Type 1 diabetes can’t be treated with pills because it can’t produce insulin even if you give them pills. It must be provided entirely externally. Glucose levels keep fluctuating because the system that controls it is out of order. A rapid drop in glucose can lead to seizures, brain damage, and heart attacks. High blood sugar can be detrimental to your health. You may develop kidney disease, eye infections, or heart disease in the future.
