Who is your greatest supporter?

Transcription

1 Diabetes voices: Who is your greatest supporter? Managing type 1 diabetes and type 2 diabetes is time consuming, complex, and often difficult. Diabetes burnout is reported as a common symptom, with many people feeling both overwhelmed and defeated by diabetes and frustrated by the burden of diabetes self-management. In order for treatment and outcomes to be successful, the original DAWN study found that person-centred diabetes care and collaboration among people living with diabetes, their family members, healthcare professionals, and other stakeholders is key. Most people living with diabetes need help and encouragement to actively self-manage and successfully perform daily tasks. Important characteristics of empowerment include social support, motivation, emotional adjustment to diagnosis, self-management skills, self-efficacy, and recognition of challenges and success. In this instalment of Diabetes Voices, we asked three people living with diabetes to tell us who or what has been their greatest supporter in living more successfully with diabetes. Meet Scott King, a biotechnology entrepreneur who manages his type 1 diabetes under the care of a doctor he has seen since Emma Williams tells us about her six-year-old son Jac who was diagnosed with type 1 diabetes as a toddler. Learn how Jess, the family s glucose sensing alert dog, has changed Jac s and Emma s confidence in living with and caring for diabetes. Finally, IDF friend and volunteer, François Gishoma explains how support and being supportive to others helps, but attitude about diabetes is what has been key for him to move forward in life. March 2015 Volume 60 Issue 1 DiabetesVoice 29

2 A boy s best life-saving friend Emma Williams Our journey with type 1 diabetes started when our son Jac was two years old. He was diagnosed after nearly falling into a coma and being close to death. Like most parents thrown into the situation, we were utterly devastated and had to learn how to deal with the daily turmoil of checking blood glucose levels, injecting insulin into the body of a petrified toddler, and managing the constant highs and lows of fluctuating blood glucose. At the time of Jac s diagnosis, we also happened to have a new litter of Springer Spaniel puppies that were two weeks old. Who knew that one day the puppy we kept from the litter would grow up to be Jac s life-saver day in and day out? Jac was four years old when we started to seriously consider training our two-year-old puppy Jess. Jac s blood glucose levels were constantly unstable with him suffering many episodes of hyperglycaemia and hypoglycaemia every day. This was adversely impacting Jac s life. A wonderful dog trainer from America (KC Owen visited us and three other families for a week to explain how we could begin to train our dogs for glucose sensing. Jess picked up what we wanted her to do within the week and started alerting us to Jac s low blood glucose levels almost immediately. She did this by bringing me his blood glucose testing kit. After weeks at home of ongoing training, Jess became more and more reliable and would alert us every time she detected Jac s blood glucose dropping day and night. I decided to approach Medical Detection Dogs, a member of Assistance Dogs UK (ADUK), a coalition group of not-for-profit Assistance Dogs organisations, including guide dogs, who train accredited Medical Alert Assistance Dogs. It was important for us to understand what they thought about Jess and her progress. We were delighted when they decided to take her on for an in training period. Jess became more and more reliable and would alert us every time she detected Jac s blood glucose dropping day and night. Currently, Jess has been going through intensive training to meet the requirements for ADUK and European standards and we hope that she will be fully qualified soon. Medical Detection Dogs have given us a tremendous amount of support, providing us with advice and guidance every step of the way. It has become easy to see how Jess improves our lives every day. She now alerts consistently to blood glucose over 11 mmol/l (200 mg/dl) and under 4.6 mmol/l (85 mg/dl). Jac, who is now six years 30 DiabetesVoice March 2015 Volume 60 Issue 1

3 Jac, who was diagnosed with type 1 diabetes at age 2 and his dog, Jess who was trained to detect blood glucose levels. old, is much more confident about going out in public, as he now knows that Jess will alert him or us that he needs to check his blood glucose. Unfortunately Jac is hypoglycaemic and hyperglycaemic unaware, and therefore he would usually be near collapse before Jess was trained to alert us. As Jess can now accompany us everywhere in public, Jac rarely reaches a crisis point anymore and we deal with the highs and lows of blood glucose before they become dangerous. Jac tells everybody that Jess is his best friend. They have such a close bond and it is amazing to watch Jess alert Jac to changes in blood glucose. We can see the concern for Jac in her eyes. They are a fantastic team and we are very proud of them! Emma Williams Emma Williams, mother to Jac and his big brother, Meical, lives in north Wales, UK. Emma works as a support worker for adults with learning difficulties. After guiding Jess through the scent training process to become a Diabetes Alert Dog, and seeing what a difference it has made to their lives, Emma is keen to help other people in the same situation. March 2015 Volume 60 Issue 1 DiabetesVoice 31

4 Achieving paradise on earth Scott King My greatest supporter is Dr. Andrew Drexler, Chair of Endocrinology at the UCLA Medical School. I met him first many years ago in I had developed type 1 diabetes in I was participating in a medical study at Cornell Medical Center and Dr. Drexler was just returned from his residency in endocrinology at Washington University in St. Louis, Missouri. As he walked by a room in which a medical student was attempting to cannulate the veins of my arm he turned to the doctor-in-training and said, What are you doing to this man? (Life lesson: do not let a medical student attempt to cannulate your veins when you have the collapsing sort.) The remarkable thing in retrospect is that Dr. Drexler always knew which innovations to suggest at each step of my evolution into becoming a modern tech-savvy diabetes patient. Of course, early on, I was always into the latest ideas. More recently I ve become more conservative, waiting until the medical evidence supported the innovation. A few years ago, when I switched to continuous glucose monitoring and the insulin pump, I felt we had achieved paradise on earth in diabetes control. As we chatted, I realized this new New Yorker in my life seemed to know a lot of the latest on diabetes advances. We began to work together. Some years later he told me the time had come for me to adopt tight control. At the time, the major study (DCCT) on the use of tight control was still underway, but he had seen the pre-publication results and told me it was true: keeping your blood glucose results low will prevent vascular problems later in life. It sounded like a good bet, and so I began to learn the methods we then had for keeping blood glucose stable. The new miracles were home blood glucose testing (plugged into a wall outlet) and better long-acting insulin. Scott King Scott King is a medical entrepreneur and composer living in New Orleans, Louisiana, USA. 32 DiabetesVoice March 2015 Volume 60 Issue 1

5 Diabetes is my life partner François Gishoma It is difficult to say what motivates me most to fight for a healthier life with type 1 diabetes because the motivation changed over the course of my illness. What has remained constant is the support of my family and my efforts to help other people living with diabetes. When I was diagnosed in 1995 after the terrible events that happened in Rwanda the genocide against the Tutsi it was very difficult to live with the conditions of diabetes. The entire country was mourning, with thousands of people killed and millions exiled. Infrastructures had been destroyed and the healthcare system was paralyzed without healthcare personnel and basic materials. While the survival of the Rwandan population was uncertain, living with diabetes during this period was almost impossible. During my struggle to live with the limited care available at that time, I realized how lucky I was to have access to some form of treatment while many others living with diabetes under the same conditions in Rwanda could not. I decided to fight back for better care not only for myself, but also for others living with diabetes. Two years after my diagnosis, I founded a diabetes association with the purpose of improving the lives of people living with diabetes and the lives of their families. During the last 17 years, I initiated and participated in various activities related to prevention, diabetes awareness, access to diabetes medication and advocacy for the rights of people with diabetes. In order to achieve improved care and access, I received a lot of support from many partners, whom I cannot thank enough. My greatest experience was the association with the International Diabetes Federation in 2003, which I believe was a major step in overcoming barriers in Rwanda related to national borders, and allowing Rwandans ways to contribute to the diabetes cause on a bigger scale with a louder voice. The reach of a Rwandan Diabetes Association had an expanded network. When diabetes is associated with other life difficulties, such as poverty, lack of knowledge on diabetes care, and malnutrition, the challenges for survival increase and a person living with diabetes becomes much more vulnerable. I believe, as a patient, that what makes the difference in diabetes self-management is a person s attitude towards the disease. The attitude that saved me is the way I positively perceived my disease: I changed from seeing diabetes as my enemy to considering it my friend. Diabetes was like my life partner who stays with me no matter what, and this attitude helped me to thrive with diabetes. Even if in the past, I made a great effort to control diabetes, I unfortunately also made mistakes and developed different complications, which have led me into a very difficult situation. Today my motivation has grown even stronger. I strive to live better because my fight is not at its end. François Gishoma François Gishoma, founder of the Rwanda Diabetes Association, is 66 years, married and father to six adult children. Diagnosed with type 1 diabetes in 1996, he has lived in Paris since 2012 because of diabetes complications. Francois received a kidney transplant in October March 2015 Volume 60 Issue 1 DiabetesVoice 33