First Annual Meeting of Type-1 Diabetes
The management of chronic diseases is a long d0rawn process where patient participation is paramount in not only achieving treatment goal, but also improves the quality of their life. We, in the Department of Endocrinology, CMC, Vellore are managing many people with type 1 diabetes who need Insulin. Almost all including their family members find it hard to cope with the burden of having diabetes at a very young age along with taking insulin injections lifelong. They often feel cursed and lonely. Why is it that tough? One of the main reasons is that, any deviation from the desired behavior modification of food, work and physical activity will impact the disease. This affects their self care and forms a significant barrier in attaining the therapeutic goals.
One of the ways of improving the care has been to create support group meets involving the patients and their relatives. The objective of the meet is to improve their knowledge and remove some of their myths and misconceptions. In this endeavor, we decided to organize the first yearly meet of all patients with type 1 diabetes above the age of 15 years including teenagers and young adults, who are attending our specialized adult young diabetes clinic on Wednesday. They are united by the same condition. On 24th May, 2014 fifty patients along with their family members joined us in the meet. We started the meet with a healthy balanced diet provided by our department of dietetics of CMC suited for the patients and their family members.
All the patients with their family members gathered inside the C.K.Job hall. The session was started by introductory address by Associate professor Dr. Asha and diabetes educator Mercy. Prof .Nihal Thomas, Head of Endocrinology addressed the gathering and introduced our chief guest Principal Prof. Alfred Job Daniel. Prof Daniel spoke about the concept of support group meetings and its benefits in managing chronic illness like diabetes, people with paraplegia, AIDS, arthritis etc. He said that the idea of creating support groups of people sharing a common disease was started in the western countries and not common in India. He informed the audience about the benefit that the patients and their family members provide each other during such meetings. It helps in understanding the disease better and coping with the disease burden and hence reduces the barriers in management. He also highlighted the need to encourage each other and follow the treatment advice provided by the doctors. After the address, Dr. Asha encouraged all the patients to introduce themselves - they ranged from students, manual labourers, tailors, teachers, engineers and professors. After the introduction, patients were invited to talk about their concerns both medical and social issues.
Educator Mrs Mercy and Dr.Mahesh conducted the interactive education session in Tamil, English and Hindi over a period of one hour. The highlights of education were informing them about various aspects of diabetes and its complications along with the burden of disease in the entire world with special importance to our country. The key messages conveyed to the patients and family members were:
- Diabetes is a long term journey in which we are united as a team in management
- You are not alone
- Your motivation is your goal
- Our goal is to ensure that your goals are attained.
- Insulin is needed to provide energy; and like air, water and food is needed for survival
Further during the education, the concept of four pillars of diabetes management namely healthy balanced diet, regular exercises, taking insulin injections and regular monitoring were stressed. A significant part of the education session was dedicated to discussing about the various aspects a healthy diet. Patients were informed about the need for incorporating balanced proportions of carbohydrates, fat and proteins while preparing food. The family members were informed about the need to understand the concept of meal pattern, frequency, quality and quantity of food.
After the education session diabetes educators Flory, Shirley, Divya and social workers John and Jerry distributed the questionnaire addressing hypoglycemia and the quality of life. Dr. Asha and Dr. Felix conducted the questionnaire session where patients and their family members were encouraged to express their concerns.
In the end, the key goal of support group to encourage interaction, build friendships and convey the message of unity in managing diabetes was successfully achieved.
1st Annual Type-1 Patients Meeting (2014)
Second Annual Meeting of Type-1 Diabetes
India being the diabetes capital of the world harbors a large population of young patients with type-1-diabetes mellitus (T1DM) who need lifelong Insulin. Numerous factors including multiple daily injections, economic burden, illiteracy and incorrect public perceptions make coping difficult for the entire family. One of the ways of improving the care has been to create support group meets involving the patients and their family. The group discussion is also a forum to ensure smooth transition of patients following their excellent management of type 1 diabetes under the care of pediatric endocrinology during childhood and adolescence. In this endeavor, the department of Endocrinology, Christian Medical College, Vellore, as a team has taken it as a mission to provide care that would make the management of type 1 diabetes less painful and more cheerful. The concept of peer-group began in the year 2011, and the 1st annual support group meet was held in May 2014. The second annual meeting was held in the Wheeler and Kutumbaiah Halls on 27th June-2015. About 100 patients of various age groups (16-40 years) with family members attended the meet from different parts of South India.
Prof.Nihal Thomas enlightened the group about the 6 key aspects of care in Type 1 Diabetes which included “healthy diet, regular exercise, self-monitoring of blood glucose, proper insulin administration, support from health care personnel, and inter-patient support”. He also informed the group that from 2010 the average HbA1c has reduced from 10% to 8.3%. Special thanks were given to the department of Paediatric Endocrinology for the wonderful support that they had given the patients in the days before they had been treated in adult endocrinology.
Dr.Premila Lee, Nursing Superintendent, CMCH was the Chief Guest of the event. She unveiled the specially designed T1DM annual calendar and spoke about the concept of support group meetings. This calendar has a group photograph of patients with type 1 diabetes, to highlight the message that they are not alone, and can cope well together.
Dr.Mahesh discussed about the life stories of famous personalities with T1DM viz., cricketer Wasim Akram, popular Actor Kamal Haasan, TV Anchor Gaurav Kapoor, Dr.Larry Hirch, Vice president, Diabetes Care at Becton Dickinson, olympic swimming champion Gary Hall Jr and athlete Sebastien Sasseville, first ever patient with T1DM to reach the summit of Mount Everest. Their stories demonstrate that with determination and optimism, anyone with T1DM can live an extraordinary life! The presentation also highlighted the need to set common goals for patient empowerment which are two fold-
- Medical: Good glycemic control i.e. HbA1c < 7% without severe hypoglycemia and no recurrence of ketoacidosis, along with delaying all the complications [micro/macrovascular]
- Social: Education [school/college], employment, marriage, children and professional work requiring freedom to travel without fear. The importance of timely monitoring to blood glucose and maintaining the AFIST (Activity-Food-Insulin-Sugar-Time) diary was emphasized.
Subsequently, to best ensure that participants could relate to one another and provide emotional support and guidance, they were organized into groups of - students, those awaiting employment or marriage, married group, and the group with children, and their concerns were addressed. The meeting also gave an opportunity for some patients and parents to talk about their own success stories, which were immensely inspirational to the others. In the end, the key goal of the support group to encourage interaction and build friendships was achieved. The message that they are not alone and are united as a team in the management of diabetes was successfully conveyed. Dr.Asha concluded the meeting with a Vote of Thanks and reminded the audience of what Mother Theresa famously said "We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop."
2nd Annual Type-1 Patients Meet (2015)
Third Annual Meeting of Type-1 Diabetes
India being the diabetes capital of the world harbors a large population of young people with type-1-diabetes mellitus (T1DM) who need lifelong Insulin. Numerous factors, including multiple daily injections, economic burden, illiteracy and inappropriate perceptions leading to stigma make coping difficult for the entire family. One of the ways of improving the care has been to create support group meets involving the patients and their family. The group discussion is also a forum to ensure a smooth transition of patients following their excellent diabetes management under the care of pediatric endocrinology during childhood and adolescence.
In this endeavor, the department of Endocrinology, Christian Medical College, Vellore, as a team has taken it as a mission to provide care that would make the management of type 1 diabetes less painful and more cheerful. The concept of peer-group began in the year 2011, and the 1st annual support group meet was held in May 2014, followed by the 2ndannual meeting in June 2015. This year, the 3rd annual T1DM meeting will be held on 28th October 2017. About120 patients of various age groups (16-40 years) with family members will attend the meet from different parts of South India.
Dr. Alfred Job Daniel, Professor, Dept of Orthopaedics and the immediate past Principal, CMCH will be the Chief Guest of the event. He will release the specially designed T1DM annual calendar during the occasion. This calendar has a group photograph of people with type 1 diabetes, to highlight the message that they are not alone, and can cope well together.
Dr.Asha and Dr Riddhi Das Gupta with their team of diabetes educators (Mrs Mercy, Mrs Flory Mrs. Ruth Volena and Mrs.Nithya), dietician (Mrs. Sandhya) and support staff (Mrs Jayalakshmi) will discuss the six key aspects of care in Type 1 Diabetes which include “Healthy eating, being active, taking medications, monitoring, reducing risks, problem solving and healthy coping”. The goal to ensure involvement of people with T1DM and their families in the interactive sessions, to encourage behavior changes for better diabetes control and quality of life. We have also recently introduced the concept of carbohydrate counting modified to suit the Indian diet pattern.
We will also appreciate those people with T1DM who have maintained their HbA1C within target for 3 years with special gifts. Mrs Mercy will congratulate the newly married T1DM couples and those blessed with a child over the last two years. This is to improve the confidence of the young people that they can lead a normal life in the society with T1DM. Their common medical problems will be discussed with a rope game to show their group strength and encourage them to interact with each other to solve their problems.
We also plan to have a music performance by Mr. Anand Kumar, who has T1DM and is a professional light music. Prizes will be distributed to the winners of the essay and painting competitions, themed around “My life with Type 1 Diabetes”. The key goal of the support group to encourage interaction and build friendships will be emphasized. Mother There is a famously said "We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop".