T1D Project C.U.R.E (Care. Uplift. Recover. Empower)

Type 1 diabetes (T1D) is the major cause of diabetes in childhood but can occur at any age. Thanks to medical advancement, now T1D is a manageable disease, albeit a chronic one. A child can live a normal life with the help of the right treatment, which includes proper dosing and handling of insulin, with regular home blood glucose monitoring, a balanced diet and regular exercise.

Data shows that childhood diabetes is prevalent all around the world, and increasing. The International Diabetes Federation Diabetes Atlas 9^th edition: ‘India is home to the second largest number of children and adolescents aged 0–19 years with type 1 diabetes in the world (171,300).’ Is almost certainly an underestimate, but we lack data on the exact numbers.

T1D is not a consequence of poor life choices or unhealthy eating habits. It is an auto-immune disorder which can affect children as young as one year old, and does not discriminate on gender, colour, caste, or social status. However, its treatment is systematically discriminatory as it needs lifelong, ongoing expensive treatment and monitoring, with significant support and education from health care professionals knowledgeable about the condition.

Although this auto-immune disorder, and its physical and psychological effects, remain the same worldwide, the attention and approach towards dealing with it differs starkly from the developed world to less affluent countries and even areas within the developed world. In areas with limited and inadequate health services, children and adolescents with T1D, even when correctly diagnosed, face considerable suffering, several minor and major complications, and even premature mortality.

Looking at the prominent organizations and foundations around the world, one can immediately identify the glaring difference between the agendas and goals of those in developed countries, compared to those based in India, rest of South Asia, and Africa. Since the basic nutritional and medical needs (including insulin, home monitoring, medical attention, lab tests, emergency care) are readily available to all affected T1D children in affluent countries, the associations and organizations there have the liberty to focus on utilizing their resources on other important areas such as developing and improving specialist knowledge; improving communication; supporting technology including pump therapy and continuous glucose monitoring; and research towards cure and other care aspects.

Understanding the demands of managing diabetes, one can readily comprehend how this impacts the quality of life of those living below the poverty line. Unfortunately, life just above the poverty line is not much greener, with many families finding it difficult to support and care for a chronically ill child. It is well established that medical expenses push under-privileged families into poverty. Families must muster willpower and the strength to sacrifice one necessity for another. In many cases this could mean having to decide between paying for one child’s education or paying for another child’s treatment to survive. These are not decisions any human should ever have to make! Many families abandon or dilute the care of their child with diabetes, pushing them into a vicious cycle of more suffering, more complications, and sadly, even fatality.

Yog Dhyan Foundation’s Primary Focus

In a world that can many a times be unfair, we would like to bend the curve of unfairness, by specifically focusing on T1D affected children belonging to the strata of society that do not have the means to afford adequate treatment for this chronic illness. We are aware that the suffering and untimely deaths faced by T1D children due to limited resources and lack of awareness, are essentially completely avoidable with the help of basic necessities such as nutrition, medical resources, and medical education. 

Many under-privileged families do not have the luxury of choose healthy carbohydrates or adequate proteins, because even managing three basic meals a day can be a challenge. For them to be able to afford insulin, syringes, blood glucose strips, glucometers, periodic medical visits, regular lab testing, and thus avoid acute and chronic complications, is impossible. Therefore, at Yog Dhyan Foundation (YDF), we have tailored our project goals to specifically address the ground level socioeconomic issues faced by under-privileged families and children with T1D in India.

While scientists overcomes the obstacles in developing a cure for diabetes, we in YDF ambitiously aim to focus on helping to provide a “C.U.R.E.” (Caring, Uplifting, Recovering, and Empowering) for T1D affected children in India. At its heart, the objective of C.U.R.E. is to holistically enrich the lives of these children by providing adequate medical support and counselling, in order to eradicate fatalities due to T1D in children in India. YDF aims to achieve this through protocols that are already in place. Through Project C.U.R.E., we have listed the fundamental necessities for each patient to survive and live a fulfilled life, focussing our resources on improving survival and well being.

• YDF has designated hospitals that they work with, approaching and simultaneously receiving referrals from doctors, with information of children diagnosed with T1D. Once the child is identified, discussions are held with the family to analyse the various challenges faced by them and the T1D child.
• YDF works with these T1D children and families to promote coping mechanisms and improve mental and emotional well-being. Our counselling includes a safe space for them to share experiences with us and more experienced families, so they get a better-informed understanding on how to cope and care for the T1D child.
• YDF provides the families with essential equipment such assyringes, BG strips and glucometers, which are essential along with insulin to manage T1D.
• YDF organises regular crucial blood tests and eye and other check-ups for the children.
• YDF conducts regular yoga classes by certified yoga instructors, since regular exercise, including yoga, has been proven to tremendously improve quality of life for T1D families.
• YDF organises regular camps where trained instructors and specialised doctors address their concerns and medical queries, and update with the latest developments in the field.  
• YDF also ensures that the children and their families have access to adequate nutrition by providing them with direct funds every month to purchase food for the T1D child.

Through such steps, YDF creates an enabling and positive environment for T1D children, helping them realise their optimum potential towards living a healthy and joyful life. The YDF camps have created a haven for affected families to meet and interact with each other. A problem shared is a problem halved: for such families to meet others facing similar circumstances, and know they are not alone in their struggles, is comforting. They derive encouragement from one another to keep going on: after all, a joy shared is a joy doubled!

The Bitter Effects of Covid-19

With the COVID-19 pandemic taking the world by storm, needless to say some of the worst hit, both financially and medically, are T1D children and their families. They must cope with the financial crises that the pandemic created, also aware that even minor medical issues they develop may get neglected under the present circumstances and become major problems. More than ever before, T1D children and families need our help. The Covid-19 pandemic is increasing the number of families in dire straits due to increasing unemployment.

Through C.U.R.E., under-privileged T1D children will have access to good quality medical support, so they can enjoy good quality of life. It would benefit not only the children but their families as well, making the impact on a much larger scale.

The Way Forward For C.U.R.E.

We endeavour to extend the capacity of Project C.U.R.E. in all aspects, in order to reach out to as many affected under-privileged children as possible. We also aim to further grow the number of people choosing to volunteer, and simultaneously develop our volunteering roles to meet the needs of C.U.R.E.

This Project is a long-term capital-intensive initiative. YDF is reliant upon voluntary donations from the general public: we receive no government funding. All donations are eligible for tax exemptions under section 80G of the Indian Income Tax Act. Each and every donation is incredibly important to us: we will use every opportunity we get to make sure everyone knows it. Besides paying for the medical supplies, the funds raised will also help pay for various educational and recreational resources and programs for these children, salaries for our psychologists and yoga instructors and for occasional fees for consulting doctors, beyond pro bono work. Funds are required for each child from the day they join the YDF family till they become financially independent. Creating this eco-system is essential to assist them in maintaining good health and supporting them from childhood into livelihood.

Transparency is Key

YDF is committed and dedicated to managing and ensuring transparency and accountability while dealing with donations. As a Foundation, it is imperative to us that all donations received, and all the valuable time of volunteers, is utilized in the most efficient and sustainable way, with the end goal of reaching our project aim.

Our Motivational Drive

Despite the stark realities regarding the availability of the specialized health care and appropriate assistance needed to manage T1D, there is an enduring positive message to take back from the gratifying evidential improvement in quality of life of the children who are a part of the YDF family. Watching the metamorphosis in these children from the day of enrolment, as they grow and mature, is heartening. Being a part of their lives through most of their adolescence, it is hard not to take their accomplishments personally. Once such T1D children reach financial independence, they remain connected with the YDF family as volunteers and donors. This holistic transformation in the lives of the children and their families is the motivational drive that encourages us to expand our reach and work even harder, in order to make a difference in the lives of the lives of as many T1D children, in India, as possible.