Imagine. You’re a volunteer on a night shift at a diabetes camp, on a shift with a nurse, and an alarm goes off. There is a corridor full of children with type 1 diabetes, all with sensors and many with Insulin Pumps. You have a debate about whether it is Dexcom or Medtronic. You complain that all Dexcom alarms can be different and it makes it confusing. You decide you need to check all the devices. You finally find the culprit in the last room. You find a Medtronic pump alarming and vibrating that says ‘sensor updating’. No further action needed. Until the next alarm… This past week I have been volunteering at a Diabetes UK Type 1 Event, a camp held near Perth, Scotland. 36 children and young people attended, age 11-15, all with type 1 diabetes. As a general volunteer, I have to do 1 night shift at the camp, accompanying a nurse, to ensure that all children are okay during the night, after a day full of activities, different foods and general excitement. Doing the night shift is a hard slog, it feels like an alarm goes off every 2 minutes, and you have to figure out: 1. Which type of device was it, 2. Which room it came from, 3. Do we have to wake up the child to treat the problem. As a general volunteer, my job is not to treat any medical problems, so instead I support the nurses by listening intently for signs of life and alarms, giving them hypo treatments and finger prickers where needed. It may not sound hard but trying to ensure that 36 diabetic children make it through the night can be a stressful job! I think that one thing never discussed about diabetes is the interruption that it can have on your sleep. Someone without diabetes can go to bed, sleep all night and feel refreshed in the morning. Someone living with type 1 diabetes can go to sleep, have a low or high blood sugar alarm, have a signal loss alarm, even have a failed sensor, and have to fully wake up after an insistent alarms to deal with the problem. That’s not even taking into account the physical effects on your body that having low or high blood sugar causes. Night shift on a camp is a very humbling experience. Seeing children being woken up, and whilst they are half asleep they are forced to eat sugar to treat a low blood sugar, give some insulin or drink water for a high blood sugar. And none of them complain. They all accept that it is something they need to do, then just roll over and go straight back to sleep. I think it is a hard concept to conceptualise, as someone without diabetes who is woken up multiple times in the night would be harping on about how tired they are the night morning, but someone with diabetes often just gets on with it. Diabetes camp is such an amazing opportunity for the children. Although they get woken up by the night nurses, it is a shared experience that everyone has to endure. They get to bond with peers who understand what it is like. It is amazing to watch and be a part of an often life changing moment for them, who leave with more knowledge of diabetes, a feeling of normalcy and friends for life. Until next time, Alyssa x

I wrote a blog for Dexcom, who makes the CGM that I wear. The blog discusses my use of the Dexcom G6 and how I find it. Here is a small preview of the blog: " Meet diabetes activist, Dexcom Warrior Alyssa 25-year-old Alyssa was born in Kilwinning, Scotland and currently lives in Edinburgh. She works for a Scottish children’s charity, where her focus is on children’s rights, and has recently graduated with her MSc Social Justice and Community Action. This passion for social justice has fuelled her diabetes advocacy. Alyssa was diagnosed with type 1 diabetes (T1D) in 2013 at age 14, after being unwell for some time. Just a week before, she was at her dad’s wedding, getting compliments on how much weight she had lost, and drinking the remainders of other guests’ soft drinks as she was so thirsty. When she was at school, she spotted a poster with the 4 T’s symptoms of type 1 diabetes (Toilet, Thirsty, Tired, Thinner), which fit the symptoms she was feeling , and later that day got an emergency appointment at the doctor, where she was quickly diagnosed. Alyssa very quickly took to type 1 diabetes, being very independent with her self-management from the start. Her difficulties didn’t begin until she started having severe hypos soon after diagnosis, which caused seizures. Due to this, she was moved onto an insulin pump and continuous glucose monitoring (CGM) system very quickly. She then moved onto the Dexcom G6 CGM System and Tandem t:slim X2 TM insulin pump with Control-IQ Technology TM , to form a Hybrid Closed Loop (HCL) system, a type of Automated Insulin Delivery (AID) system ..." To read more, please visit here! - https://www.dexcom.com/en-GB/blog/hcl-systems-with-warrior-alyssa?utm_campaign=UKIEWarriorEmail_Junel&utm_source=sfmc&utm_medium=email&utm_content=Body:Button:ReadMore

I first worked with Tino (aka The Diabetic Mogul) when we were both volunteer organisers for the T1D Festival in London with ' League of Diabetes ' in October 2023. Since then, I have been in awe of Tino, the impact he makes in the diabetes community, his dedication, and the joy he spreads to the people he meets. Please enjoy this guest blog from Tino! Until Next Time, Alyssa Hello, I'm Tinotenda Dzikiti, a global advocate and podcaster from Zimbabwe. I've been living with type 1 diabetes since 2010 and manage it through insulin injections and continuous glucose monitoring technology. I'm passionate about advocating for NCD awareness and support. How did you first get started in diabetes advocacy, and what made you interested in it? My journey into diabetes advocacy began in late 2019 when I had the opportunity to participate in a diabetes advocacy camp. This experience exposed me to a diverse group of like-minded youth from across Africa who were passionate about raising awareness and advocating for better care and support for people living with diabetes. The camp was a transformative experience that ignited a fire within me to become more actively involved in advocacy efforts. Can you share the story behind the creation of the Global Diabetes Insights podcast? What motivated you to start this platform? Global Diabetes Insights evolved from the Diabetic Mogul Podcast, a platform initially designed to share insights and experiences within the diabetes community. Motivated by a desire to broaden the conversation and provide a more inclusive platform, Global Diabetes Insights was born. Teaming up with my esteemed colleague Konstantina Taki, we sought to create a space where experts, advocates, and individuals living with diabetes could share their stories and knowledge. Our goal is to educate, inspire, and empower the global diabetes community while fostering unity and support. Your work with the Young Leaders in Diabetes (YLD) initiative is remarkable. What inspired you to become involved with this organization, and what impact do you hope to achieve through your contributions? I was deeply motivated to join the Young Leaders in Diabetes (YLD) initiative by my personal journey with diabetes and a strong desire to effect meaningful change within the diabetes community. Recognizing the significant challenges and complexities that individuals living with diabetes, especially young people, encounter daily, I felt compelled to lend my voice and efforts to advocate for impactful changes. In Zimbabwe, where resources for diabetes management are limited, being nominated by an IDF member association from my country was a pivotal moment. It reinforced my commitment to making a difference and highlighted the importance of local advocacy in addressing global health challenges. My primary goal within the YLD initiative is to raise awareness about diabetes, particularly among young people, and to advocate for improved access to quality care, education, and support services. By sharing my experiences and insights, I aim to inspire and empower others to take charge of their health and well-being. Through collaborative efforts and meaningful partnerships, I hope to contribute to a future where diabetes is better understood, managed, and ultimately, where stigma and discrimination against individuals with diabetes are eliminated. #dedoc° is an innovative initiative in the diabetes community. Could you elaborate on your involvement with #dedoc° and how it's contributing to improving the lives of people with diabetes? My involvement with #dedoc° has been incredibly rewarding. Since 2020, I've collaborated with other advocates and healthcare professionals to drive positive change in the diabetes community. #dedoc°'s focus on education, advocacy, and support has helped to improve the lives of people with diabetes by providing valuable resources, information, and a supportive community. This initiative has created a platform for people with diabetes, healthcare providers, and industry leaders to come together, exchange ideas, and work towards a common goal of improving diabetes care and management worldwide. Zimbabwe faces unique challenges in managing diabetes. Could you shed some light on the current diabetes situation in Zimbabwe, and what efforts are being made to address the issue? Zimbabwe faces unique challenges in managing diabetes, primarily stemming from limited access to healthcare services, medication, and education. Despite these challenges, concerted efforts are underway to address them. The country has implemented awareness campaigns, community outreach programs, and partnerships with organizations such as the International Diabetes Federation, Life for a child. These initiatives aim to enhance access to care, raise awareness about diabetes, and empower individuals living with the condition to actively manage their health. Additionally, the PEN-Plus clinics in Zimbabwe have been instrumental in providing specialized care and support for those affected by severe forms of diabetes, contributing significantly to improving outcomes and quality of life for patients. As an advocate, what do you believe are the most pressing issues surrounding diabetes on a global scale, and how do you envision overcoming these challenges? One of the most pressing issues facing the global diabetes community is the limited access to affordable healthcare and medications, particularly in low- and middle-income countries. This lack of access exacerbates the already significant burden of diabetes-related complications and mortality rates in these regions. To address these challenges effectively, it is imperative to prioritize comprehensive diabetes education programs that empower individuals to manage their condition effectively. Additionally, efforts should focus on improving access to essential healthcare services, including regular screenings, medication, and diabetes management tools. Advocating for policy reforms that promote affordable and equitable healthcare for all individuals living with diabetes is crucial. By addressing these key areas, we can work towards reducing the burden of diabetes and improving the quality of life for millions of people worldwide. Could you share a memorable experience or success story from your journey as a diabetes advocate that has deeply impacted you? One of the most impactful moments in my journey as a diabetes advocate was when I had the opportunity to provide peer-based diabetes education and support to adolescents and young adults at Parirenyatwa Group of Hospitals in Zimbabwe. Witnessing the transformation in these individuals as they gained knowledge, skills, and confidence to manage their diabetes was incredibly fulfilling. One particular encounter that stands out is when a young girl, newly diagnosed with type 1 diabetes, approached me after a session. She was overwhelmed and scared, unsure of how to navigate this new chapter in her life. Through our conversation, I could see her demeanor change from fear to hope as she realized that she was not alone in this journey. Over time, I watched her become more empowered and proactive in managing her diabetes. She started sharing her experiences with others, offering support and encouragement. Seeing her resilience and determination to live well with diabetes reminded me of the profound impact advocacy can have on individuals and communities. It reinforced my commitment to continue advocating for better diabetes care, education, and support for all those affected by this condition. In your opinion, what are some misconceptions about diabetes that you encounter frequently, and how do you work to dispel them? One common misconception about diabetes is that it only affects older people or those who are overweight. In reality, diabetes can affect anyone, regardless of age, weight, or lifestyle. To dispel this misconception, I work to raise awareness about the different types of diabetes and the factors that contribute to its development. I also emphasize the importance of early detection and management to prevent complications. What advice would you give to individuals who are newly diagnosed with diabetes or those who are looking to become more involved in diabetes advocacy and support efforts? For those newly diagnosed with diabetes, my advice would be to educate yourself about the condition, seek support from others living with diabetes, and work closely with your healthcare team to develop a management plan that works for you. For those looking to become more involved in advocacy, I would encourage you to use your voice to raise awareness, share your story, and advocate for change. Together, we can make a difference in the lives of people living with diabetes.

Today we have another guest blogger, Katie Lamb. Katie is an amazing artist, who focused her art on diabetes and using her art as a medium for advocacy. I first came across Katie on Instagram, having seen for art and related to it. Me and Katie have also volunteered together on a Diabetes UK Type 1 Event last year! I am so pleased that Katie has shared her insights, this is truly a great blog about the power of art and alternative media can have!I hope you enjoy, and thank you so much for sharing Katie. Until Next Time, Alyssa x 1. Can you share your personal journey with type 1 diabetes and how it inspired you to use digital art as a means of advocacy? I was diagnosed with type one diabetes just before my second birthday in February 2003. I was fortunate to have a relatively good diagnosis, despite the first healthcare professional my mum raised concerns with telling her that she was ‘just hormonal’ and I was ‘just a toddler’.   Art and diabetes have always been connected for me, for as long as I can remember. When I was little, I would draw a picture for my nurse before every clinic, so she had an entire gallery of my art over the years. Even before I was making art about diabetes, art was a space for positivity and a way for me to process the emotions that come with diabetes, and that has just grown and evolved as I have grown. I don’t think I ever would have predicted my art reaching so many people or just how important it has become over the years through my diabetes journey, but it is interesting to look back and see that creativity and art have always been a vital part of my relationship with diabetes.  My first experience using art for advocacy was to advocate for myself, although at the time I was completely unaware that was what I was doing. During a period of intense burnout as a teenager, art had become the natural option, and potentially the only option I felt I had to communicate how I was feeling and what I needed. I don’t think I realised this at the time, but it was as much a way for me to understand my own experience and needs as it was for my healthcare professionals. The success of that painting in opening conversations both within my clinic and then at Diabetes UK events for professionals sparked something within me, and confirmed this passion for making a difference in the lives of people living with diabetes in the way I knew best.  I had always felt called to have some involvement in diabetes, having grown up with a close relationship with my diabetes team. Exactly what that aspiration would look like was unclear for a long time, and so there was a sense of relief with this discovery of the intersection between art and diabetes and the potential it held for a place for me in this community and on this journey, and I had something to offer in my own way.  2. How has digital art become a powerful tool for advocating for type 1 diabetes, mental well-being, and improved access to diabetes technology? I first posted on Instagram in March 2020, I thought maybe there would be someone out there interested in art and diabetes, and I stumbled into this incredible community where art became a way to empower other people with diabetes and to share both my story and the stories of so many others. I posted my very first digital drawings- which was a medium I had never used before and was really using just for a bit of fun between studying- starting with some portraits with quotes I thought resonated with my experience of diabetes, and people online had the most incredible response.  There was something empowering about seeing other people with diabetes being turned into art that meant other people wanted to join in, and I was able to connect with people with diabetes from around the world who were responding to the art or wanting to be involved with it. It was significant to me to begin with a series of portraits of people from across the diabetes community. Portraits act of signifiers of the status of the subjects, and what could be more important in advocacy spaces than the voices of lived experience.  Advocating for the community can only work when it takes place in collaboration with the community, when it is rooted firmly within the shared stories of the people represented. Creating digital art has become a key tool for me to hear and represent the stories of other people living with diabetes, to connect with the community and understand the concerns of a vast number of people to help drive change in the areas that matter most to real people’s lives.  People respond to the art with their own stories, with their reflections and insights and often with a new perspective which adds to my understanding of a topic. I am constantly open to an interpretation of an artwork separate from my initial intention, but which allows me to learn more about people’s experiences of diabetes. The right meaning is whatever you see, or you feel when you interact with that artwork, so the piece almost comes alive, existing as different things to different people and influencing a range of advocacy goals. Digital art has given me a platform and tool to communicate with healthcare professionals and industry organisations, which is a key factor in taking these conversations out of the community and into the spaces where our voices have been long overlooked. It has given me the opportunity to highlight the need for access to technology along with sustained support and education, and to present new perspectives of the emotional burden of diabetes to professionals. Diabetes is messy and abstract, and I believe a creative approach is needed for organisations or professionals to understand a full picture of these abstract feelings and experiences.  3. Your art often highlights the emotional aspects of living with diabetes. How do you hope your work resonates with others who share similar experiences? From the very early days of drawing pictures in diabetes clinic, art has been a tool for me to reflect and process my own experiences with T1D. Frequently, the most challenging of these experiences have been the emotional aspects of living with diabetes, and thus it has become deeply engrained in the work I share. Art was often the only way I could highlight these topics within my own life, where I struggled to find the language to verbalise what I was feeling or find the opportunity to have these conversations with anyone who really understood.  Art can feel less confrontational than having to speak about these things and abstract enough that people have the option to interpret it in a way that makes sense in their own diabetes journey, so it does not rely on us all having the same experiences, just sharing a safe space to talk or to just understand. We all have such different experiences of diabetes, but we are united by these themes and common threads that exist for us all. When so many people with diabetes experience elevated levels of isolation, the ability to share and hear stories can make a dramatic difference, and art offers an alternative way into these stories.   I hope people know that they are not alone, that their experiences are valid, and their story is simultaneously remarkably unique and held in a collective understanding of what it means to live with diabetes. I hope people feel heard through the artwork even if they don’t have the language to vocalise it themselves, or that an artwork can inspire a creative expression of their own. My art often comes back to self-compassion, which has been a challenge for myself, and I know it is a challenge for many people with diabetes- I hope we can use art to see some beauty within the mess, to see ourselves as masterpieces in the making.  It is important to remember that people online are not therapists, and that its vital to have your own boundaries around the support you can give and the things you want to share online, which is a lesson I’ve learned over time. Talking about emotional wellbeing and mental health requires a level of mutual vulnerability so I am constantly considering both how I feel about sharing an artwork and what impact it could have on the person on the other side of the screen. Mutual vulnerability is hard, it asks a lot from both sides, but I think done well it leads to a sense of trust and safety in the space which gives me the opportunity to be open and for people to resonate with these topics.  These paintings took a significant amount of vulnerability to share, but I was driven by the need to raise a topic I so rarely see being spoken about. My struggle with self harm using insulin went unnoticed for so long partly because no one knew the signs or how to raise the conversation about it, and for hypo awareness week I knew this was something I needed to share in the hope that having these conversations might help prevent another person sharing this experience.  4. In what ways do you believe digital art can break down stigmas surrounding diabetes and mental health, fostering a more supportive and understanding community? For a significant part of my journey with diabetes I was unsure if anyone felt the same way about having diabetes, or if this was simply how it had to be and would be forever. I experienced periods of burnout throughout my childhood with diabetes, but never had the space to acknowledge what that meant or what could be done. People around me were not having the conversations, and I didn’t know I was allowed to talk about it. By using art on social media, I can start conversations about diabetes and mental health, or join in, by contributing my experience. I think the more we give ourselves permission and opportunity to discuss these difficult bits of diabetes, the more we can break down the stigma around them. It is so easy to fall into a cycle of toxic positivity on platforms like Instagram, to strive for inspiration without acknowledging the inevitable challenges. I hope my art gives people the chance to know it’s okay to find diabetes really rubbish some days, to have a positive outlook and still cry about it, and to accept that sometimes diabetes might stop you – and that those things don’t make you any less strong or worthy of anything.  It has been a joy to experience countless conversations in response to my art work, from people who have lived with diabetes for decades but never seen these topics expressed in a way that resonated with them, or with parents of children newly diagnosed with diabetes who can find some reassurance and peace in these messages of hope and encouragement.  I hope we can all make space for creativity in our diabetes, to connect with each other and advocate with the tools and gifts we have to use.

Currently in the world there are some abhorrent things happening, and it is easy to feel helpless and unsure how you can help. An example of a current humanitarian crisis is the genocide currently ongoing in Palestine (#FreePalestine) however this isn’t the only event where human rights are being breached. One of the awful things that have done is put insulin pens on the list of banned items , which means that individuals who are insulin dependent (including Type 1 Diabetics) cannot get access to the medicine that literally keeps them alive. A group of diabetes advocates have grouped together after this news broke, and decided to start a petition named the ‘Insulin Consensus’, which is a statement of consensus urging uninterrupted insulin access during all Humanitarian Crises. The insulin consensus outlines the basic human rights that the withholding of insulin breaks, including Right to Life (UDHR Article 3) , Right to Health (ICESCR Article 12) , Child’s Right to Health (UNCRC Article 24) , and Rights of Persons with Disabilities (UNCRPD Article 25) . As insulin is essential for survival, access to it safeguards the human right to health and life, and the recent restrictions on insulin during conflicts are alarming. The insulin consensus is an urgent call to action, asking for all parties to recognise the humanitarian impact of obstructing insulin access, prioritising the health and survival of those reliant on this life-saving medication. It is imperative to understand that the absence of insulin equates to death for those in need, therefor any barrier hindering insulin access for a region or population must be addressed promptly. To sign the insulin consensus, and to safeguard the futures of individuals dependent on insulin all over the world, visit here - https://www.change.org/p/urging-uninterrupted-insulin-access-in-humanitarian-crises?utm_medium=custom_url&utm_source=share_petition&recruited_by_id=92eb9cc0-c906-012f-1c8f-40401bfb750c Until Next Time, Alyssa x

Hi! My name is Kirsty MacLean and I am a Children’s Diabetes Dietitian. I have worked as a diabetes dietitian for 12 years; working with children and young people for 11 of them! For the last 6 years I have been working in Glasgow. For anyone who has met me it will make sense that I do my job because I love talking and I love food! My interest in diabetes started when I began volunteering with Diabetes UK in 2009 at their Type 1 Events where I have met some amazing children and volunteers with diabetes over the years, including Alyssa. I have been fortunate enough to be able to put the things I am interested in and love together as a job, and I work with an amazing team of doctors, nurses, other dietitians and diabetes support workers to help children and families living with diabetes. Firstly, what are the main duties that a diabetes dietician does day-to-day? Diabetes dietitians work as part of a multidisciplinary team which means we work with lots of other job roles who specialise in diabetes to make sure we can give the best advice to our children and families. Our main job is to teach about how food can affect blood glucose levels, how to count the carbohydrate in food and match this to insulin doses. We can advise on snacks for exercise, hypo treatments and some of the more complex effects of food and how to manage this to get the best blood glucose levels possible. We do this at the hospital when someone is newly diagnosed, at clinic appointments, over video and telephone calls as well as email so our days can differ a lot. We also check that children and young people are growing and can speak about other diet related issues such as allergies or coeliac disease if this affects any of the young people we are working with.   What role does a registered dietitian play in educating families about carbohydrate counting and meal planning for children with Type 1 diabetes? At diagnosis, a dietitian will meet with a young person and their family to find out what their daily routine of meals, snacks and activities were like before diagnosis to be able to advise on how diabetes can fit into this and any healthy changes that might be needed. Dietitians have excellent knowledge of food and how it relates to blood glucose levels as well as having the knowledge of how to make sure a young person is getting all of the vital nutrition they need from all of the food groups, taking into account any likes and dislikes, allergies or religious food restrictions to make sure that the advice given is tailored to meet the needs of that young person diagnosed with diabetes. Dietitians will discuss healthy eating including the roles of the food groups in the body, identifying carbohydrates from all the food groups including starch, lactose, fructose and refined sugar found in confectionary and processed foods, how to count the carbohydrate including a variety of methods such as picture books, apps, labels and weighing portions. Generally humans are creatures of habit, meaning we eat similar things and often repeat meals week on week. Families will often feedback that when they are able to plan ahead, this saves time as they are able to work out the carbohydrate in advance and adjust the insulin dose based on the blood glucose level using the correction factor/insulin sensitivity factor. For times that planning is not easy or a challenge like birthday parties or eating out, dietitians can help to educate families on how to manage these trickier times whilst keeping diabetes safe and in check! What are some practical methods for teaching parents and children how to effectively count carbohydrates in meals and snacks? During my time working in diabetes the technology has come a long way! There is now so much information online and many apps that can be used to help children and families to count carbohydrates, including Nurtacheck and Carbs and Cals . As dietitians we will always teach the “old fashioned” way of reading labels, weighing out portions and how to work out the carbohydrates. This is important to make sure that if technology fails there is a back up plan!! I would always teach families to be cautious if using labels for “dry” foods like pasta and rice to ensure they are using the correct nutritional information for the way a food has been cooked when they are weighing it out. Other practical methods to help make carb counting a bit easier include using handy measures such as the same cup or bowl to have standard portion size or the same serving spoon which can be adjusted as a young person grows and their portion size increases. Apps and websites can be very useful but people with diabetes should try to use trusted resources to make sure they get the most accurate information available to them! Apps now often include barcode scanners but may contain nutritional information that is not verified so children and families should check with their teams what apps they are recommending. There are newer apps that use artificial intelligence to take a photo of the food but these apps do not seem to be the most accurate and are not supported with clinical data for use at the moment so we would not recommend them! Why is carbohydrate counting essential for children with Type 1 diabetes, and how does it help in managing blood sugar levels? Carbohydrate counting with flexible insulin dose adjustment is the best way to achieve time in range for blood glucose level. It is a simple principle (not always simple in reality!) which means the more carbohydrate someone is going to eat, the more glucose that enters the blood stream therefore the more insulin that is required to allow this glucose to get into the cells to use as energy or get stored away. Achieving this optimal time in range (~70% glucose levels between 3.9-10mmol/l) for blood glucose is essential to make sure that children and young people with diabetes can grow and develop at the same rate as their peers and ensure that the extremes of blood glucose e.g. hypoglycaemia and hyperglycaemia are minimised, reducing the impact on day to day activities and therefore quality of life. By achieving a time in range more than 70% of the time, this is associated with an Hba1c ~48-53mmol/ mol which is associated with a reduced risk of diabetes related complications. If we can get this right as soon after diagnosis as possible then it is thought that the body “remembers” periods of good diabetes control which can benefit young people as they grow into young adults. How can parents ensure that their child maintains a balanced diet while also managing carbohydrate intake for diabetes control? A healthy balanced diet is essential for all children and young people whether they have diabetes or not! Carbohydrates are required for energy and should be included at every meal. By aiming for a balanced plate of food including starchy carbohydrates (pasta, bread, potatoes, rice, wholegrain cereals), lean protein (chicken, eggs, fish, pulses, lean meat) and a large portion of fruit and vegetables, the impact on blood glucose will be minimal and will “match” the insulin given. Families should choose high fibre, starchy carbohydrates for the majority of the carbohydrate that they eat which is more slowly released into the bloodstream as glucose. This helps to match the carbohydrate with the action of the fast acting insulin. This can improve the time in range for blood glucose and reduce the risk of hypo and hyperglycaemia. Of course, in reality, it can be much more complicated than that!! Often there are particular meals that might be higher in fat or protein that can cause issues with the blood glucose. Meals like pizza are a good example. Often the fat and the protein in the pizza means the glucose releases very slowly into the bloodstream and often the insulin works quicker than the release of glucose resulting in a  hypo within 30 minutes of eating and injection/blousing for a meal. Dietitians can help to advise on strategies for managing tricky meals. When it comes to managing exercise and physical activity in type 1 diabetes, what role does a dietician play? Children aged one to five years should be physically active for 3 hours per day, at least an hour of this should be moderate to vigorous for 3 to 4 year olds!! That means being out of breath with a raised heart rate. For children aged 5-18 years this should be 60 minutes every day of moderate activity with heart rate raised and feeling a bit warm and sweaty! Adding exercise and physical activity into the balance of carbohydrate and insulin can often cause issues for many people with diabetes. Dietitians have the understanding of the effect exercise has on the body, its requirement for fuel and the need for recovery nutrition so are able to look at the complex relationship between carbohydrate, insulin and exercise to provide individualised advice on how best to manage sports and physical activity to optimise the blood glucose levels whilst ensuring that performance and recovery are also prioritised. Often for everyday activity such as PE or going to a dancing/kickboxing class a minor adjustment to carb intake or insulin might be required. When the intensity, duration or frequency of the activity is increased more planning around carbs, insulin and post activity nutrition is required and that is where a dietitian can help with this. What are some strategies for adjusting insulin doses and carbohydrate intake before, during, and after exercise to maintain stable blood sugar levels? This very much depends on the duration, intensity and frequency of the exercise as well as when the last bolus (food dose) of fast acting insulin is given. As a starting point if the exercise is within 2 hours of a meal with fast acting insulin then less insulin will be needed for the meal. This is because the fast acting insulin will be still working hard when the exercise starts. The amount to reduce by will be very much dependent on the individual and will depend if they are using injections of insulin, an insulin pump or a hybrid closed loop pump. Usually a 20-50% reduction to the insulin with the meal before is required sometimes with the need for additional carbohydrate drinks or snacks during the activity too! If you or your child do a lot of physical activity and are finding it is impacting on diabetes or diabetes is impacting on the activity then get in touch with your local team for advice on how to manage this. What resources are available to help parents and children learn about the relationship between exercise, diet, and Type 1 diabetes management? Diabetes UK and JDRF are charity websites with lots of information on them. The Digibete website is also full of useful information. Some health boards in Scotland and NHS Trusts in England may also be using the Digibete app which can then be accessed on a mobile device. What are some common misconceptions that people have about diabetes dietitians, and how can we debunk these myths? That we are the food police!! Most dietitians have chosen this career due to wanting to help people and an interest in food and science. ~No question is silly and if something is complicated, dietitians are specialists in being able to turn tricky information into easy to understand advice so please ask. Are dieticians included in clinic appointments as routine?  This varies depending on where you live but there will always be a dietitian who works with the team that you can get in touch with. Check with your diabetes teams to know how best to contact the dietitian. What message do you want to let people know about dietetics in paediatric diabetes? Dietetics goes hand in hand with all other aspects of diabetes self-management including blood glucose testing, insulin dose adjustment, management of hypos and hyperglycaemia and there is no “one size fits all”. Everything needs to be considered on an individualised basis and that is where you dietitian and your diabetes team can help. Diabetes camps and the improvement in practice after the camps: Can you share your experience volunteering at the diabetes camps and how your practice evolved after these experiences? Living as a minority (I do not have diabetes) with a group of children and adult volunteers who do have diabetes for a week was a hugely valuable and humbling experience. I was given the privilege of sharing their experiences and thought processes based on the activities we were undertaking including snack adjustment, insulin adjustments, overnight testing etc. The children and volunteers were all able to learn from each other and the practical application of physical activity principles was the best learning experience I could have asked for. It is certainly what got me to where I am today and I now know a fabulous community of people with diabetes with “real life” experience who I admire and can learn from every day! Any other opinions you would like to share? Diabetes is always there and can seem overwhelming but your dietitian and diabetes team can help to plan and try to make sure that diabetes does not stop you from doing the things you want to!

When you google diabetes and the environmental, the first search results that comes up are regarding how climate change impacts on the development of diabetes. Whilst this is important to consider, what I want to discuss is how having type 1 diabetes impacts on the environment. I use diabetes technology to self-manage my type 1 diabetes. This means that every 3 days I change an infusion set for my insulin pump, and every 10 days I change my CGM (continuous glucose monitor). For a visual representation of what this looks like, here are a couple of videos of a set and sensor change. Each piece of equipment I use to manage my diabetes comes as single use plastic, comes in a disposable form that must be thrown away and is not able to be recycled. I don’t like that this is the system; however, I have no choice as there are no options that are environmentally friendly, I am at the mercy of the pharmaceutical companies that develop and sell the technology. Climate action isn’t just an issue of individual responsibility. As Greta Thunberg said: “I want you to act as you would in a crisis. I want you to act as if our house is on fire. Because it is.” Our world is burning, and I believe that it is the responsibility of everyone to put climate action over profit, and this includes large pharmaceutical companies. Pharma are forcing individuals to choose: 1. The more environmentally friendly choice of multiple daily injections, with less plastic waste, but worse overall diabetes control. 2. Using diabetes technology, with a lot more plastic waste, but better overall diabetes control. People with diabetes are essentially being forced to increase their carbon footprint slightly. Last October, I approached a major diabetes pharmaceutical company about this issue. They previously had a reusable insertor for their CGM (Continuous Glucose Monitor), however had just released a new CGM that has a disposable insertor, thus making more of an environmental impact via single-use plastic. I asked about this, and asked if they were developing a more environmentally friendly design, for example with recyclable plastic, with less single-use plastic or with a reusable design. I was told that the company were taking steps to offset their environmental impact, but that this model was industry standard. The rep had no other answers about the impact they were having on our planet, which in my opinion should be one of the main considerations when developing new products. Rather than changing their design, they had chosen to make more money at the expense of the environment, then take steps after the fact to ‘balance’ their impact. I am unsure of the true impact of the environmental impact. I know many of the major diabetes companies have plans to lower their overall carbon emissions, but are there environmental considerations when designing new products? Have people with diabetes been consulted in the designing of products, to ensure that what is important to them is considered? Given the severity of climate change, climate action needs to be considered at all levels, but especially in major companies with big impact, and I am worried that they are putting profit over climate action. What will it take for companies to take this issue seriously?

In March 2024, I attended the ATTD (Advance Technologies and Treatments in Diabetes), which was held in Florence, Italy. I attended via a Dedoc scholarship, which is a programme that allows patient advocates to attend diabetes conferences, with the intention of allowing patient advocates to use the knowledge and #PayItForward to their community in their own way. Below is a video from one of my friends, Cameron Keighron, who was also a dedoc voice at ATTD, discussing the importance of including lived experience voices in research. I knew Cameron previously as we are both also volunteers for IDF Europe (International Diabetes Federation Europe), and I was delighted when we were both accepted for a dedoc scholarship at ATTD. Cameron is a research PhD Candidate from Galway, Ireland, and they have also been involved in several different diabetes research projects. Pair that together with their lived experience of Type 1 Diabetes, Cameron has a lot of expertise in the benefits of including lived experience voices in research. In the video, Cameron discusses how research projects and researchers will ultimately benefit from including lived experience voices in research as the end product will be superior. If the end users, the people who will ultimately benefit from the research, weren't included in the process, it will show, as the end result may not be as useful as it needs to be. People with lived experience should be included in conversation, they have expertise that should be valued, and they should be shaping the research. Individuals like Cameron, who have vast experience from a range of places, would be an excellent addition to research, however including anyone with lived experience would be beneficial. All voices should be valued, people from all walks of life, and not automatically the already engaged individuals. I have mentioned it previously, but Renza Scibilia and Jazz Sethi published " Guidelines for Effective Partnerships " to aid impactful collaborations with the diabetes community. This is also very relevant to researchers wanting to include the lived experience voice. Additionally, Emma Doble , founder and director of CEE Health and Patient Editor at the BMJ, discussed including lived experience in research at a recent #dedoc Symposium. She explained that the politics in research is changing, and more and more journals are looking for research that have included lived experience voices throughout, as it adds more validity to the research. If you want to hear more from Emma, her contributions start at 58 minutes in the video below: Including people with diabetes and making them feel valued can only benefit your work, so why wouldn't you include them?! Until Next Time, Alyssa x

Below is a blog by my fabulous sister, Iona. Iona is 3 years younger than me, and has been with me throughout a lot of my type 1 diabetes journey. When I was diagnosed we shared a room, and she got woken up by my mum’s night time tests as well, she heard the constant pump alarms, and she has had to help me when I unfortunately had severe hypos. This post was initially quite upsetting for me to read. It is hard to learn that your health has impacted on someone else so much. I wasn’t sure whether to post, however I didn’t want Iona’s experience to be silenced. Her experience with my diabetes is just as valid as mine.  I see you Iona, and thank you for sharing your experience. Until Next Time, Alyssa x Hi! My name is Iona, and I am the younger sister of Alyssa (by 3 years). We are very close as siblings, and as I’ve been involved in Alyssa’s diabetes over the years, she asked me to write a blog about my perspective on her diabetes as a sibling of someone with type 1 diabetes.  What is it like having a sibling with Type 1 diabetes, and how do you handle it? Having a sister with type 1 diabetes is not like having a sibling without. We have a normal sibling relationship and interact normally almost every day, however it is impossible to ignore the fact that she is burdened by this condition. If I were the perfect sibling to her, I would not notice the extra attention and care she gets given by those around me. I understand completely why this is, given the circumstances in which the attention is given. When I was younger, I would get jealous that she would get given extra sweets and juice when I was not allowed them.  How has your relationship with your sibling changed since they found out they have Type 1 diabetes? When Alyssa first got diagnosed with diabetes, I felt ignored around the house. My mum was so worried about her, checking on her all the time, and at the time I remember feeling a bit left behind. I understand now that it was all new and scary for both my mum and Alyssa. I was only 11 at the time so I was confused as to what was happening.  Over the years, I have had to help Alyssa when she has had severe hypos, including giving glucagon. These situations are extremely scary for me, and I feel that sometimes I am weary of going out alone with Alyssa because in the past she has had multiple seizures and bad hypos. I feel that if I am alone with her, I will not do something wrong when trying to help her and cause further damage.  It isn’t all negative though. Having had these experiences with Alyssa has inspired me to study nursing at University, because I want to properly know how to help people like Alyssa in the future. Do you have any tips for siblings who also have to help take care of a brother or sister with Type 1 diabetes? I would say don’t be angry with them when they get the extra attention, because they are already going through a rough time with their own health without you causing unnecessary stress for them too. How do you deal with feeling sad or worried about your sibling's diabetes? I have yet to find the cure for being anxious around my sister and her diabetes because there have been many times where I have had every right to be worried. Especially out in public where it is harder to deal with. She has had seizures on the way home from school, in the house, on holiday, and out shopping. I don’t think I will ever be completely okay with going out with her on my own, I get overwhelmed at the idea of having to be alone dealing with her hypo seizures. But at the end of the day she is my sister and I love her, despite the fear. Have you had any tough times because of your sibling's diabetes, and how did you get through them? Because I have been responsible for dealing with Alyssa when having a seizure, I get a panicked feeling whenever her blood sugar is even slightly on the lower side. She is completely helpless when seizing, and often I am the only one around that has an idea of how to help her. Alyssa had a seizure on the way home from school years ago, I was forced to run home and grab her glucagon so that I could give it to her. It was one of the scariest moments of my life because it was the first time I had been alone with her while she was seizing. When I got back to her, I froze. I couldn’t understand the instructions on the glucagon and had to get a stranger to administer the medicine. I couldn’t help it; I froze in fear. I am better now that I am older and understand better what will help her. When we are in public and something happens to her, strangers rally together to help her, if this wasn’t the case that day, I don’t know what I would have done. Can you share a special moment that shows how close you are to your sibling, even with their diabetes? Alyssa has taken her experiences and turned them positive. Due to her work in diabetes advocacy, I have attended award ceremonies with her, including the Young Scot awards and Diabetes UK inspire awards. These experiences with Alyssa’s diabetes inspired me and me to go to university to study nursing, something I am currently studying.

Last week, I was luckily enough to attend ATTD (Advance Technologies and Treatments in Diabetes) 2024, which was held in Florence, Italy, where Dedoc offered me a scholarship to attend as a Dedoc voice. These scholarships allow patient advocates to attend Diabetes scientific conferences, with the intention of allowing patient advocates to use the knowledge and #PayItForward to their community in their own way. At every conference, Dedoc hosts a symposium where they invite individuals in the Dedoc community to present, and it is live-streamed and free to access. This year, there was a spectacular line-up, with Nathalie Bauer & Renza Scibilia hosting, Asra Ahmed discussing the D-Coded project, Tinotenda Dzikiti discussing bridging the tech gap in underserved regions, Nur Akca discussing the accessibility of diabetes technology for people with disabilities and Leon Tribe discussing the Insulin Consensus. After these inspiring and thought-provoking presentations, the audience got onto the topic of including the lived experience voice in conversations that affect them. Watch the Dedoc Symposium here . The conversations were interesting, and it sparked some thoughts within the room. How does meaningful engagement with people with diabetes happen? Should people with diabetes be paid for their expertise? The reality is that people with diabetes provide a lived experience perspective that cannot be replicated, therefore showing that the lived experience voice should be valued more than it currently is. After the Dedoc Symposium, I decided to interview some patient advocates who were present at ATTD and ask them if they had any advice for companies wanting to work with people with lived experience. Find the video below: I think the great thing about the diabetes community is that often multiple people have similar ideas but different execution. As I was editing the video, Renza Scibilia and Jazz Sethi published their “ Guidelines for Effective Partnerships ” to aid impactful collaborations with the diabetes community. This is excellent, and I feel like it highlights everything the patient advocates mentioned in the video above! Work can only benefit from including lived experience voices in the work, but it’s important that the time and expertise of people in the diabetes community aren’t taken advantage of. This can be done in a multitude of ways, as stated in the guidelines for effective partnerships : Reimbursement Recognition Representation Including people with diabetes and making them feel valued can only benefit your work, so why wouldn’t you include them?! Until Next Time, Alyssa x

Rossi and I met when we were both volunteering and speaking at the T1D Festival event in London, which was run by the League of Diabetes. I was intrigued about the advocacy work Rossi and her colleagues were undertaking in Bulgaria, and I asked if she was interested in guest blogging for me! I think it is always really interesting as well seeing the differences in healthcare systems from country to country. Please enjoy! Until Next Time, Alyssa x I am Rossitza from Sofia, Bulgaria and I have been living with type 1 diabetes since 1995. I don’t remember life without diabetes as I was diagnosed when I was 6 years old. Accepting my diabetes was an entire process which wasn’t always easy (happened in my early 20s). This impacted my diabetes management and my entire wellbeing but now I can honestly say that diabetes is just a part of me. I got into diabetes related advocacy activities 12 years ago. I was going through a difficult time emotionally and on the advice of my therapist back I started searching for others living with diabetes, and so I began volunteering for the Bulgarian Diabetes Association (Bulgaria’s national patients organisation). When I first started volunteering I helped with the  social media set up and organising events for younger people living with the condition in Bulgaria. Since then, we have created a lot of different initiatives with the aim of raise awareness of type 1 diabetes, improving education about diabetes management, promoting sport activities and creating a community. Active Living with Diabetes - Живей активно с диабет One life changing event in 2013 for me was a youth leadership camp. I participated in the ‘Young Leaders in Diabetes’ program run by the International Diabetes Federation. When I was there I met more than 100 people from around the world who were just like me, and this not only changed my perspective on life with diabetes but also gave me friends for life. People you can text at 2am knowing they will respond and will know exactly how you feel. This experience inspired me to help create a similar community in Bulgaria, so in 2015 we established “Active Living with Diabetes - Живей активно с диабет” - an association dedicated to the needs of people living with type 1 diabetes In 2018 we created a documentary about type 1 diabetes and pregnancy where we covered the most important questions for women with type 1, answered by the best specialists in our country. The team was formed of endocrinologists, OBs, psychologists and anesthesiologists. I can say that this is a topic I find close to my heart as I become a mom in 2021 and I know personally how crucial having a support system is in this important moment of an individual's life. They need not only access to information and to the right specialists, but also to emotional support and unfortunately there are still so many taboos around this. In 2020-21 during covid pandemia we did a series of psychological webinars about the emotional side of life with type 1 diabetes.  In 2022 we participated in a program of the Bulgarian diabetes association supporting Ukrainian refugees with insulin and medical devices.  In 2023, we were part of the organising team at the IDF Youth Leadership Lab, as Bulgaria hosted the camp for IDF Europe (International Diabetes Federation Europe). I joined as a guest speaker and a volunteer at the first edition of the T1D Festival fundraising event in London, which was run by the awesome charity ‘League of Diabetes’   In November 2023 for World Diabetes Day we introduced the #blueballoonchallenge in our country via series of posts, reels and an event. Healthcare in Bulgaria There are both good and bad aspects of diabetes health care in Bulgaria. Some of the positives about diabetes healthcare in Bulgaria include: access to free insulin recent access to both continuous glucose monitors (2022) and insulin pumps (2016).  That being said, there are still things that need to be changed. There is no national diabetes plan in Bulgaria, and the national diabetes registry is still under development. Last year there was a big insulin crisis, with shortages of some insulins in different parts of the country. People were having to go on Facebook closed groups and ask other people with type 1 diabetes if they had spare insulin. I was just lucky not to be using an insulin that had a shortage, but it gives me chills and terrifies me every time imagining being in their place, and not having access to the drug that keeps me alive.  Our health care system in general has a lot of issues which impact on overall diabetes care, including: A lack of doctors and nurses, There are few clinics that specialise in diabetes, The system to get prescriptions is very complicated, A lack of complications preventive checkups, One of our priorities for campaigning in the coming year is diabetes technology.  There is a lack of information for patients on diabetes technology, but there also isn’t equal access to diabetes technology. We want fair and equal access to the newest technologies, such as the hybrid closed loop systems, however currently this looks quite far away.

ZOE is the latest nutrition technology sweeping the nation. My question is: Is ZOE more helpful than it is harmful? What is ZOE? Zoe markets themselves as the “World’s most advanced nutrition tech, on your arm”. Aimed at non-diabetics, ZOE uses a Continuous Glucose Monitor (CGM), like a   Freestyle Libre , to track how your body and blood sugar responds to food, exercise, stress and sleep, with the aim of improving overall health. Zoe claims to improve nutrition and help individuals manage their health. They do this in several steps. Firstly, they ask you to do a test kit, which involves a gut health test (sending a sample of faeces to a lab for analysis), a blood fat test (sending a blood sample to a lab for analysis) and finally a blood sugar sensor, where you wear a continuous glucose monitor to get real-time insights into your blood sugar levels. The second step involves getting your test results, using the ZOE tools and gaining access to the ZOE nutritionists. What is a CGM and how is it usually used? The step in this process that I am most concerned about is the involvement of Continuous Glucose Monitors in the ZOE process. Continuous glucose monitors (CGMs) are used in the monitoring and self-management of diabetes, and there are many different types of CGMs. I myself use a type of CGM named   Dexcom , and have used a few different types of CGM during my time living with Type 1 Diabetes. Having a CGM allows me to better understand and control my blood sugar levels, alarming me if my blood sugar levels are going low or high and making my day-to-day life a bit easier. The reason I need this is because the cells in my pancreas responsible for producing insulin no longer work, meaning I will need to replace the insulin my body no longer makes for the rest of my life. Having a CGM makes the incredibly difficult balancing act of replicating a body’s natural process slightly easier. On the flip side of that, having a CGM can be incredibly overwhelming. With the Dexcom CGM that I am on, I get a blood glucose reading sent to both my insulin pump and phone every 5 minutes and whilst extremely helpful, it can often be information overload. There are so many factors that affect blood glucose apart from just food, such as physical activity, hormones, and weather, and getting your blood sugar perfect 24/7 is an impossible task. When you receive your blood sugar in a graph format, displaying every single mistake you’ve made in the day, it can be demoralising. You strive for a completely flat line in the graph, even though that is an unrealistic goal, and it can become obsessive. My Concerns about ZOE It sometimes can be hard to remember that even non-diabetics don’t have a flat line in their blood sugar levels. If someone ate food, for example, there would be a natural (small) spike in blood sugar after food, which the body would automatically correct for. My fear about the use of the ZOE CGMs on non-diabetic individuals is that firstly they overly focus on the completely natural spikes in their blood sugar. The factors that affect blood sugar in non-diabetics have already been evidenced, and so if individuals are aware of these factors, there is no need to wear an expensive health monitor that would only cause unnecessary anxiety. Additionally, Dr Shivani Misra, a diabetes consultant at Imperial College London, said:   “By overly focusing on one aspect of your metabolism, i.e. glucose, an individual might be neglecting all of the over aspects of their metabolism and health” . Can using ZOE lead to other problems with your health, rather than fixing problems? Can ZOE lead to disordered eating? My main concern about ZOE is that having the CGM may increase the monitoring of food, eating and weight, much as it does for an individual with Type 1 Diabetes, leading to an increased prevalence of disordered eating in the wider population:   “diabetes may increase risk for an eating disorder by increasing attention and monitoring of food, eating, and weight. This preoccupation can become a bit of an obsession—particularly if people think they have to be perfect in their diabetes management.”  Having access to the data that ZOE provides could mean individuals get obsessed with the spikes in their blood sugar, leading to maladaptive methods of controlling said spikes in blood sugar levels, which in turn can lead to wider issues. ZOE still in trial phase Finally, I am concerned that many people are accessing ZOE whilst it is still in its trial phase. The evidence isn’t clear that the process is truly beneficial, and I am concerned that this process could cause a lot of harm to individuals who are truly trying to better themselves. If you are worried about your blood sugar due to family history of diabetes, or you feel you may be having symptoms of diabetes, please seek advice from a qualified medical professional before purchasing and using a potentially unnecessary medical device. I wanted to write this blog as I am continually getting adverts about ZOE bombarding my social media, with different celebrity endorsements. With the constant diet culture in this world, I am concerned that ZOE would only add to this in a negative way. Until next time, Alyssa Note: I am not a medical professional or expert in this topic, I am an individual living with Type 1 Diabetes. Here are some further articles that discuss ZOE: https://www.spectator.co.uk/article/is-the-glucose-monitoring-craze-really-so-healthy/ https://www.wired.co.uk/article/zoe-nutrition-apps https://www.thetimes.co.uk/article/is-the-zoe-app-worth-it-w9wgg0lnb https://unherd.com/2023/10/we-need-to-talk-about-zoe/