Helping a loved one who has diabetes is very important because they need the support of their partner, family and the community constantly, to be able to keep themselves fit and contribute effectively to themselves and the community. In Indian families, where cultural ties run pretty deep, parents usually take a very active role in the diabetes management of their child, especially when the child is young. Young children tend to forget taking insulin on time or to eat food after the insulin shot, or maintain the right interval following insulin injections. Keeping a check on this aspect of their diabetic management is necessary only when the child is on insulin injections. If the child has access to modern sensors and insulin pump, then educating the child and the family to learn to handle the gadgets effectively, change the pods or sensors at the right time and make adjustments in the insulin delivery to prevent low sugar episodes, will go a long way in ensuring the right sugar level balance.

There are some good sites that give guidelines and tips to parents and caregivers of T1D to offer the right support. Some children need support and others might want to handle their condition independently. But generally there are ways in which the family can offer support to their T1D family member. The foremost important thing is to just keep a watch if the child is taking the insulin injections properly, whether the quantity of insulin drawn into the syringe is as per the instructions of the doctor and monitor that the child eats a proper diet after that. It is also important to encourage the child to take up a physical exercise routine on a daily basis. The family must ensure that the child carries a card that says they are diabetics and if found unconscious, they must be given sugary drinks immediately. The child has to have glucose tablets or any other sugary drink or food with them always. It is also important for the family to inform the school teachers, especially the class teacher and close friends of their child. Parents should educate themselves and the child on diabetes management and keep their knowledge updated. They must be in touch with the diabetic doctor on a regular basis and also get an annual check-up done.

There is a lot of misconception about food intake and often families keep badgering the T1D child about eating or not eating something, especially when in public, which makes the child rebel or go off into mood swings. It is better to cultivate a culture of eating the foods that are recommended for diabetics for the entire family. It is also important to ensure that the T1D child is able to eat a dessert of their choice occasionally, gently encouraging the child to monitor the portion size. When a T1D child sees that other family members are enjoying desserts and sweets but they are not allowed to eat, that is very disturbing and in some ways I think that is cruel too. Today there are several carb-free or low-carb dessert options for persons with diabetes and other health conditions. There is no need to restrict the child in any which way.

In our family, we developed a food culture that was diabetic friendly, for the most part. Both the girls were usually engaged in some physical activity or the other such as swimming, cycling, walking or playing. But it is only when we attend functions such as weddings you find relatives compelling the child to eat a sweetmeat, saying, ‘nothing will happen if you eat one day’, etc. And for the child it is difficult to resist, if not the sweet, then at least being polite to the adults and obey them, which will result in difficulties later. Then there are others who will try to be over protective and obstruct the child from eating anything!

In our culture where Indian families get to meet often during festive occasions, handling the relatives becomes a little difficult. Some family members try to blame the parents for the condition of their child, or not handling the child properly. There are others who accuse the parents of over-protection, pampering, or being too strict with the child. Some family members cannot handle a child that is different, and try to keep away from interacting with a family that has a T1D child. We, as a family, have encountered all of these experiences.

But the most dangerous intruders are those who come up with several ‘miracles’ and ‘cures’ , offering to puts us on to practitioners of alternative medicines, yoga, varma kala, visiting places of worship, receiving blessings of saints and yogis  etc. This gives false hopes to the child, which becomes distressed if the parents don’t act on such spurious advice or if the parents go on to believe their well-meaning ‘friends’ and put the child through any of these systems or people. It is sometimes life-threatening if the practitioners ask the child to stop taking insulin and take the alternative medicine or a ‘divine’ product. Through this blog I would like to caution everyone that there is no cure for Type 1 diabetes yet and once the cells that produce insulin are destroyed, as it happens in the case of T1D, it is important to deliver insulin into the body externally, throughout the life of the T1D person.  Under no circumstances should insulin be stopped, ever. Of course, the quantity of insulin may be reduced if the T1D person is involved in sports, or makes alternations in food that requires less carbs etc. Other than being on external insulin delivery, they can lead a normal life and follow their passion. Incorporating physical exercise and a good, regular fitness regime apart from a healthy diet  that will keep the T1D person as near normal as possible. During my journey as a journalist and a mother of a T1D child, I have come across several inspiring T1D persons who have accomplished feats which even normal, healthy persons have not. There are sportsmen, mountaineers, actors, models, swimmers, doctors , scientists and artists who have taken type 1 diabetes in their stride and moved ahead to focus on living with a positive attitude in life. In Niky’s case, she was involved in so many activities, all at the same time and never expressed exhaustion, except when her efforts to do something were thwarted or she felt was not  treated properly , which happened often, considering that she is a creative person  full of ideas and the society does not offer opportunities on a platter to anybody.

There is a lot of work to be done to create awareness about T1D in our country where erroneous myths, faith-related misperceptions and lack of sensitivity toward people with disabilities are rampant. Even today, despite the knowledge explosion due to  global IT revolution, most teachers and educated people continue to languish in their own limiting beliefs and fail to broaden their mental horizons. In the rural areas and even in some people living in cities, families with a T1D child are being misled by quacks, and unscrupulous religious preachers and tantrics placing the life of their child in danger.

The fact is, insulin is a hormone secreted by the pancreas that controls the amount of glucose in the bloodstream at any given moment. In the case of type 1 diabetes, the cells that secrete insulin are destroyed permanently and have so far, never been able to be replaced. So we have to resort to hormone replacement therapy, by giving insulin externally. Unfortunately, insulin cannot be given orally because it gets digested  by the digestive enzymes . Therefore it has to be injected subcutaneously. And this is a lifelong therapy which T1D persons have to continue without fail. Research is going on  globally to find an alternative to insulin administration by way of inhalers, oral insulin, islet cell transplantation etc., but nothing has changed the therapy yet that can be an easier and more reliable option for insulin therapy. By far the easiest option now available is the insulin pump that can be looped with a sensor and sugar levels can be managed digitally, using a smartphone. It is almost like artificial pancreas, but this complete set of gadgets to maintain sugar levels at near normal conditions is not yet available in India. And whatever is available is still a far cry from the latest advancement in the US, Europe, UK and other advanced country and is exorbitant , not just the initial cost but also  the recurrent costs.

A family that has a T1D child is no different from that which has a special child in many respects. On the other hand, oftentimes, it becomes difficult because a T1D child looks normal and people fail to understand their special needs. Dr. Mohan’s Diabetes Specialities Centre has been doing yeoman service towards this end. But we need the active collaboration of the government , corporates and expert centers such as Dr. Mohan’s to bring about a huge change in the T1D ecosystem to enable them to function as effectively contributing persons to themselves, their families, communities and the state.

Note:  In this series, I will be putting down facts and events that have happened to me as a matter of fact. Anything I say in these articles is based on my own understanding and experiences and not on any scientific research.  I would also like to mention here that I would be drawing upon  those experiences of my eventful life, which I believe are relevant to the discussion of the emergence of autoimmune conditions in my child, who we think is  different from many other children. I will be trying to make it as relevant to parents of T1D children as possible, but with a plea not to infer anything, compare or follow any of the practices we as a family followed. Simply because, every family is different, every child is different and so are circumstances. The takeaway should be confined to the existence of various possibilities, opportunities and a positive approach toward creating a fulfilling life for your child.