On a terribly cold day in January 1921, a father carried his 14-year-old son into Toronto General Hospital, Canada. Leonard Thompson had developed type 1 diabetes and was dying. Leonard’s father, facing the loss of his son in a ward besieged by other children waiting to die, gave his permission for an experiment to be conducted for insulin to be injected to Leonard. The result of that injection changed the history of medicine. Leonard Thompson did not die. The doctors, Banting and Best, went round the ward injecting other children. A disease that killed every human in history who had had it was on the run. For this great discovery, the Nobel Prize in Physiology or Medicine 1923 was awarded to Frederick Grant Banting (jointly with JJR Macleod). The discovery of insulin has been a breakthrough and has greatly revolutionized both the treatment and the prognosis of diabetes, one of the diseases most studied in the history of medicine. No wonder, we celebrate World Diabetes Day every year on 14 November, the birthday of Sir Frederick Banting who co-discovered insulin along with Charles Best. Millions of people around the world have diabetes; some 463 million adults were living with diabetes in 2019. As per the International Diabetes Federation, one in ten people is living with diabetes today.
What is Type 1 Diabetes
The majority of people with diabetes, about 95%, have type 2 diabetes, which means their bodies do not properly use insulin, a naturally-occurring hormone secreted by the pancreas. Insulin is needed to get glucose, formed when carbohydrates are broken down by the body, from the bloodstream into cells. Type 1 diabetes (T1D), on the other hand, is a less common but more severe form of diabetes. It is an autoimmune condition where the body does not produce insulin at all, so it has to be injected through the skin. Presently, there is no way to prevent it and can occur in people at any age, of every race as well as every shape and size. It used to be previously known as juvenile diabetes or insulin-dependent diabetes (IDDM). I personally think T1D is a more serious disease than cancer, in the sense that while most people with cancer die or get cured within few years of diagnosis, people with T1D (most of whom are children or young adults) have to fight the disease lifelong. Studies done at our centre in the last two decades show that half of the people with T1D are not able to survive beyond their 30th birthday.
Youth Onset Diabetes in Kashmir
In 2006, the Indian Council of Medical Research (ICMR) decided to establish the Registry of People with diabetes with Young Age at Onset (YDR) in the Country. The “Young Age at Onset” was defined as diabetes diagnosed at the age of 25 years or less. The major objectives of YDR are to generate information on disease pattern or types of youth-onset diabetes including their geographical variations within India and estimate the burden of diabetes complications with an idea of helping promote awareness about the magnitude of problem among professionals, patients and public health partners. SKIMS became the 11th regional collaborating centre for YDR in March 2015 with me as the only principal investigator of YDR project from Jammu and Kashmir. So far we have registered around 600 patient with youth-onset diabetes with 68% having type 1 diabetes, 19% having type 2 diabetes (a disease unheard of in people aged below 25 years, a decade back) and remaining 13% having other types of diabetes. Understandably, most of these 600 patients in our registry have to take daily injections of insulin starting from one or two injections of insulin and generally progressing to three or four injections daily.
Type 1 Diabetes During Lockdowns
From August 2019, there have been unprecedented curfews and lockdowns in Jammu and Kashmir, the latest lockdown being due to the unprecedented outbreak of coronavirus disease 2019 (COVID-19) which has now become a global catastrophe. A significant correlation with worse outcomes was seen in people having comorbidities, particularly diabetes, hypertension and cardiovascular disease. Among people with diabetes, those with T1D had to bear the brunt as insulin, along with much other medicine which needs refrigeration was short supply. Cancellation of domestic flights, both cargo and passenger, affected the supply of refrigerated medicines in many parts. Add to that the restrictions on inter-state movement of vehicles and the supply chain were all but broken, at least during the initial days of lockdown. Other factors like non-availability of consumables needed for diabetes monitoring and treatment devices (insulin syringes and pens, glucometers, glucose strips, etc.), changes in the daily schedule, lack of physical inactivity, increased eating (snacking while watching TV or using a mobile), stress and behavioural changes particularly inappropriate sleep patterns could have played a role in worsening of blood sugar in such situations. Normally we would register 70-80 new cases in our ICMR sponsored Young Diabetes Registry every year. But for last one year or so, we have registered hardly a dozen or two of new cases which speaks volumes about the diagnostic and management issues and challenges these young patients and their caregivers must have encountered. Given the economic impact of the COVID-19 pandemic in India, and most of our T1D patients belonging to low socio-economic strata of the valley, the financial hardships people faced were colossal.
Type 1 Diabetes and the role of Diabetes Nurse Educator
The theme of world diabetes day 2020 is “diabetes: nurses make the difference.” The role of the diabetes nurse educator is to help other nurses and patients to assess what they know about diabetes and improve their knowledge and understanding of the condition. Nurses play a key role in diagnosing diabetes early to ensure prompt treatment, providing self-management training and psychological support for people with diabetes to help prevent complications, and identifying patients at higher risk of complications and need of intense support. There is a significant need for more education and funding to train nurses around the world with the skills to support people living with diabetes. Healthcare providers and governments must, therefore recognize the importance of investing in nursing education and training. With the right expertise, nurses can make the difference for people affected by diabetes, particularly to those with type 1 diabetes.
Dr Shariq Rashid Masoodi, Senior Professor & Head, Paediatric Endocrinology Services, SKIMS