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/

Below is a blog by the amazing Rochelle. Rochelle has a big social media following, specifically on TikTok, where she currently has 15.2k followers on her page @rochellefeatherstone. She revolves her content around living with Type 1 Diabetes, and this is where I first came across her. Rochelle had made a video about being a part of a project named ‘Together Type 1’, which is a Diabetes UK youth project that I am also a part of (although in a different location of the UK!). Through that video, I made contact with her and we quickly realised that we would both be in attendance at the UK wide Together Type 1 meetup, where we met! Watch Rochelle’s TikTok about that day here - https://www.tiktok.com/@rochellefeatherstone/video/7284959101585591584?lang=en Rochelle is great, and killing the social media game. Read on to learn more about her journey with type 1 diabetes, and how she utilises social media as an advocacy and awareness raising tool. Following on from this and how this led to her creating a resource for individuals living with Type 1 Diabetes named ‘My Diabetic Brain’! Until next time, Alyssa x Hello, my name is Rochelle Featherstone and I have been living with Type 1 Diabetes for over 20 years now. My current Diabetes management includes Freestyle Libre 2 for glucose monitoring and NovoPen injections for my insulin (Fiasp/Tresiba) management. Today I would like to talk to you about my own experiences of creating Type 1 Diabetes content for social media. The highs, the lows, the lessons I have learnt, and what I would recommend for anyone starting their own social media journey. Starting my Tiktok Journey I wish I had a more inspiring story on how I started creating Type 1 Diabetes content (TikTok @rochellefeatherstone), but I fell into it by accident. It’s no secret I have always been active on social media, and when this new and upcoming app (TikTok) started circulating during Covid-19 lockdown, of course I was straight on it. At the beginning of my social media journey, I wasn’t as open about my Type 1 Diabetes as I am now. When I first started my TikTok, I was focused more on lifestyle, recipes, events and voiceovers. Unfortunately for a long time I felt I needed to hide my Type 1 Diabetes, and that no one would be interested in hearing my story. It’s the most vulnerable part of who I am, and exposing that for all to see on the internet was intimidating. One day I mentioned in a video that I had Type 1 Diabetes, and a user asked me a question about my management in which I replied with a video, and let’s just say the rest is history. My videos then snowballed and completely changed direction to be T1D focused. I had no idea When I was first starting out how many people my videos would reach, how many T1Ds are on TikTok actively seeking out T1D content, the friends I would make and the people I would be able to help. I have observed a change in content from first downloading TikTok in 2020, and it being majority entertainment focused, to what it is now, whether that be BookTok, health orientated, fitness focused and overall socially and environmentally aware. Witnessing this shift in content has had such a huge impact on the direction of my content. TikTok has adapted and therefore so has its content creators. Social media commonly is demonised. I have had the conversation time and time again, the classic: ‘young people just need to get outside and get off their phones’. This argument is outdated and counterproductive. Surely young people being interested in health related content, advocating for more awareness and learning about health conditions is productive? Social media can and is pivotal in a lot of individuals' health journey’s. Personally I have learnt more about Type 1 Diabetes through social media than I have in the last 20 years of Doctor led appointments. And that’s not anything against the care the NHS provides, but we have a sea of information, online campaigns and websites, such as Diabetes UK, at our fingertips. My content has and will continue to be backed by evidence based research, studies and factual information. I try to bring as many visual aids (videos, infographics, diagrams, article clips etc) as I can into my content. As Type 1 Diabetics we know this world like the back of our hand, my content is not just to educate Type 1 Diabetics. It’s to reach far and wide and expose those who are not familiar with Type 1 Diabetes to our daily challenges and obstacles we face, and having visual aids and factual information is the backbone of making impactful and safe content. Social media creates communities (e.g. #GBDoc on Twitter), connects like-minded individuals who do actually get what you’re going through, shares valuable information and brings together voices to advocate for change. But most importantly, it makes you feel less alone. Living with a 24/7 autoimmune condition such as Type 1 Diabetes can be frustrating, lonely and isolating. I have never met a more supportive group of individuals than that of the Type 1 community. The Type 1 community on social media breaks stigma, provides insight and educates those whose lives have never been impacted by Type 1 Diabetes. You will always belong in the Type 1 community no matter how long you’ve been diagnosed, if you have a child with Type 1 or you’ve lost someone due to Type 1 Diabetes. Lessons and Challenges This brings us nicely onto the lessons I have learnt and the challenges I have faced when creating Type 1 Diabetes content. Social media is great, it's informative, collaborative and provides a sense of belonging. It, however, is not a well-polished present with a shiny bow on top. Honestly social media can be a brutal space, especially when you start to have to deal with the keyboard warriors. I once made a video showing my blood sugars and on the same video I had two separate people comment, with one saying my blood sugars were too good and I’m too strict with my control, and the other saying my blood sugars were awful and I would get complications soon. One thing you’ll immediately learn about making social media content is you will never please everyone. Make the content you love, the content you want to advocate for and the content you wish you had seen when you were younger. Which brings us on to the content and a valuable lesson on the type of content you are delivering. Health related content is something you need to be extremely mindful and careful with. My content will only ever speak about my personal experiences of living with Type 1 Diabetes. I am not a doctor, I do not have any qualifications to be able to give medical advice, nor do I have any right to give out medical recommendations. I often get messages asking for medical advice, or to review someone’s charts, however this is something I will not do. Liability is something you need to consider when making health related content, you do not want to be responsible for a serious medical incident because you gave out medical advice you have no right or qualification in giving. I remain mindful, factual and only ever talk about what works for my Type 1 Diabetes. ‘My Diabetic Brain’ Interestingly, my most engaged content always tends to be around opening the curtain on what living with Type 1 Diabetes actually looks like. Mainly what my blood sugars look like through the day, T1D hacks like travelling, carb counting, and how I managed to get my A1c down. Due to the repetitive conversations with followers on how I managed to control my A1c I created a resource called ‘My Diabetic Brain’. As Type 1 Diabetics, our resources are often extremely limited, and so I created ‘My Diabetic Brain’ as a resource library for diabetics to note down, keep track and document all aspects of living with Type 1 Diabetes. This includes carb counting, care contacts, A1c tracker, ratios and doses, meal planners and mental health sheets. In a world that’s as complicated as it is, I wanted to create resources that make Type 1’s lives easier in every aspect I could. My Diabetic Brain can be accessed via Etsy by searching My Diabetic Brain or alternatively following this direct link: https://mydiabeticbrain.etsy.com Directing my social media content to be Type 1 focused is one of the best things I have ever done. I haven’t always had people believe in me when it comes to my social media journey, but that’s never been important, I believed in myself from the very beginning. If you need someone to believe in you and your Type 1 content creator journey then you have me. Start wherever you feel comfortable, this could be a day in the life, what your management looks like or your diagnosis story. Once you start and create those first few pieces of content you will gauge what your audience is most receptive to and what you are comfortable with sharing. Even if you don’t want to make content yourself I urge you to get involved online with the Type 1 community to lean on for support and help break Type 1 stigma. Social media is opening the door for you, we are in the midst of a social media generational shift to health conscious, socially, environmentally aware content. There’s never been a better time to join us advocating for wider tech availability, break down Type 1 stigma and open the curtain on the reality of life with Type 1 Diabetes. Showing the world how truly relentless and incredible we are and the hidden daily battles we face. I look forward to seeing you on my FYP very soon! – Rochelle

In this guest article, Rebecca Barlow-Noone discusses the intersectionality between diabetes and poverty/homelessness, and how the challenges faced by individuals living with diabetes increase when you add in these extra challenges. Rebecca has an MSc in Population health from University College London, and currently works at the European Public Health Alliance. I first met Rebecca when we both attended the Youth Leadership Camp run by International Diabetes Federation Europe (IDF Europe) in Romania in 2017, where we both represented the United Kingdom. I am delighted to know, and be friends with, someone who advocates for such important issues. Diabetes of any type is incredibly difficult to manage. Yet juggling diabetes with poverty or homelessness makes the condition ever more challenging to handle. Anyone with diabetes can testify to its unpredictability, and the importance of routine for our glucose levels; yet the unpredictability of homelessness impacts everything: from access to healthy food, to the ability to attend regular healthcare appointments. While volunteering with a local Trussell Trust food bank in London, I saw how nutritious food was difficult to come by for people in poverty or homelessness. The food bank did an excellent job by asking if beneficiaries had any dietary requirements, however all special food requests were still dependent on donations and availability of healthy foods with a low glycaemic load. Additionally, people living in accommodation without cooking facilities, or people in temporary accommodation such as hotels, frequently could only rely on cold, instant foods, which can cause spikes in blood glucose levels. This was often the case for asylum seekers, who were often placed in poorly equipped temporary accommodation. On more than one occasion I spoke to people with diabetes, who were finding it very challenging to cope with the demands of their condition in their circumstances; not to mention accessing regular healthcare. For rough sleepers, a plethora of additional challenges may make diabetes difficult to manage, which I studied during my masters degree. Though data is lacking, it is clear that people experiencing extreme poverty and homelessness have significant nutritional deficiencies, affecting health and mental health. Homeless shelters often place bans on needles, and lack secure refrigeration, presenting unique challenges for those who are insulin dependent, or who use other injectable medications. Walking on the streets without adequate footwear puts people at risk of foot problems. In terms of accessing care, the availability of good medical care varies inversely to the needs of the population, known as the ‘Inverse Care Law’. The lack of routine and no fixed address for appointment letters makes attending regular check-ups very difficult to maintain; meaning people are more likely to attend A&E and experience readmission. The list continues; though very little data exists on the experience of people with any type of diabetes and homelessness in the UK. Evidently, we need more patient-centred approaches when it comes to diabetes care for people experiencing homelessness. There is an interesting project upcoming, led by the charity Pathway, looking at how to better support homeless people living with type 2 diabetes; a project which will surely have ripple effects for Type 1 and other forms of diabetes. Thanks to Alyssa for the opportunity to write this guest article! I hope as a diabetes community, we can champion the needs of all with the condition. Follow me at @r_bnoone and on LinkedIn.

Today's guest blog is written by Shelley, who is sharing her personal journey with Type 1 Diabetes. I first met Shelley when we volunteered together at the Diabetes UK Family Weekender in Aviemore, however we connected more when we both signed up to be volunteers for Diabetes Edinburgh, and are now both Young Leaders for the Diabetes UK Together Type 1 project. Shelley is part of the ‘Diabetes Tech Can’t Wait’ campaign, run by Diabetes Scotland, and in this she has shared her story online, even reaching out to local newspapers and getting the campaign national recognition! She has also raised awareness of diabetes and the campaign in her workplace, making a massive difference to her peers. I am inspired by Shelley; she has lived with Type 1 Diabetes for so long and now is using her personal story to help other people! Keep reading to hear her lived experience journey with diabetes. Until Next Time, Alyssa x Hello! My name is Shelley, and I’m 24 years old. I live in Edinburgh currently, but originally I’m from Golspie up in the Scottish Highlands, and I work at Scottish Water as a Risk Technician, which I have done for over 3 years. I was diagnosed with type one diabetes at the age of 4, and I currently am on Omnipod Dash & Dexcom One, which has been a long wait to get access to - over 19 years with Type 1 before I had a pump due to being “too well controlled” & long waiting lists! What age were you diagnosed, do you remember being diagnosed and how did it impact on your life? I was diagnosed at age 4, so I don’t remember much at all from when I was younger. I do remember eating so many sweeties, crisps and fizzy juice and honestly have no idea how my HBA1C was always in range. My mum was always shocked at how I managed my Diabetes with the amount I ate, and not to mention the fact that I never carb counted! However, she managed to never give it away to the doctors by telling them how much sweeties I was eating and wasn’t carb counting and didn’t even attempt to (thanks mum :D). I feel I didn’t take my Diabetes control seriously enough until I moved out at the age of 17, as I knew I wouldn’t have my parents with me every day. How has managing Type 1 Diabetes influenced your daily routines, including diet, exercise, and overall lifestyle choices? I really used to hold back on doing things because I was worried I would have a hypo doing things I enjoy. I now live my life the way I want to and don’t let Diabetes get in the way. It is hard but I try not to let it get in the way. If I want cake, I’ll have cake, even if I’m high! When I exercise, if I’m hypo, I’ll have a carton of juice, wait 10 minutes and carry on! Don’t let diabetes stop you! I go to the gym and love to weight lift, especially barbell squats! It took me a while to find the pattern of why I was going high at the gym but soon realised lifting weights increases blood sugars because of adrenalin, so I soon had a temp basal set up for when I went to the gym to prevent the high spike. I also like to go running (only on nice sunny days haha), and for this I put a reduction of insulin on my insulin pump to prevent any hypo’s. When I was on injections, I would only go on runs when I didn’t have active insulin on from meals. Were there any unexpected or surprising aspects of living with Type 1 Diabetes that you discovered along your journey? MATHS. I hate maths, but when you have diabetes, you don’t have a choice in doing it. You need to make so many decisions and calculations to even have a small biscuit! A calculator is my best friend and I just have to make sure I calculate what I’m eating correctly. How have your family, friends, or a diabetes community contributed to your ability to cope with and manage the condition? My friends and family have helped me massively along the way, can’t thank them enough for the support. I got in contact with Diabetes Scotland and got put in touch with a young leader, Emma. Ever since meeting Emma through Diabetes Scotland, my confidence in managing my diabetes and confidence in general has grown a lot. I signed up to volunteer at the Diabetes UK Family Weekender in Aviemore and met so many amazing volunteers and lovely families who were attending the event. This is also where I met Alyssa! After volunteering for Diabetes UK, I attended my first Diabetes Edinburgh support group meetup and met so many amazing people, I now volunteer for Diabetes Edinburgh and love being involved in the group. After speaking with other people living with type 1 diabetes, I soon realised all the tech that was available and learnt a lot about the insulin pumps and what I could have. The diabetes community is unbeatable, they are always there to help you and they understand how you feel! Can you recount a particularly challenging or rewarding experience related to your journey with Type 1 Diabetes? Getting on the Omnipod dash insulin pump, this has changed my life. I have better control and so thankful of all the functions a pump has such as using temp basals. I need to increase my insulin by 40% when working due to stress levels and having this has helped my overall control. I can go out a walk / exercise and not have to stress because I’ve put on my temp basals to keep me in range. I just feel my overall stress levels have improved since going onto the pump. Volunteering for Diabetes UK/Scotland is so rewarding and fun! I get to meet so many amazing people and have made friends for life through volunteering. I get to help other people with just telling them about my life living with diabetes and tech I use, and I get to do this all whilst going out and doing fun activities! How do you navigate the emotional and psychological aspects of living with a chronic condition, and what coping mechanisms have you found effective? Everyday is so different, Diabetes can be so frustrating, and some days are tougher than others. No two days are ever the same, I can have the exact same food, drink and sleep, and I’ll have ‘perfect’ range one day, same routine next day and I’m way above 13. Random high blood sugars are my biggest frustration, I can just be sitting watching TV and I’m running really high, but I’ve not had or done anything to cause this. Truthfully my friends and family help me cope, especially my T1 friends. When speaking to others living with diabetes, they understand exactly how you feel. I am very open about my feelings and anything that is bothering me, I like to speak to my friends and family to get it out in the open, and it feels like a weight has been lifted from my shoulders just talking it out. Please don’t suffer alone. Have you integrated any diabetes management technologies into your routine, such as insulin pumps or continuous glucose monitoring systems, and how have they impacted your life? I currently use both the OmniPod Dash and Dexcom one to self-manage my diabetes. These have been a fantastic addition to my life as I have finally moved from injecting myself over 5x everyday to an insulin pump that continuously delivers insulin into my body, and this makes life so much easier! I’m now no longer covered in bruises from my injections and finger prick! What words of wisdom or practical tips would you offer to someone who has recently been diagnosed with Type 1 Diabetes? Type 1 Diabetes can be a lonely thing to live with. Reach out to people, speak to your family and friends. Join social media pages for type 1 diabetes, because it may feel like it, but you aren’t alone in your journey! You can still live a normal life. What are your hopes and aspirations for the future, both in terms of managing Type 1 Diabetes and achieving personal goals? I would love to get onto a closed loop system with the OmniPod 5 and Dexcom G6 as this is the latest technology that is available. I am currently on a waiting list for this, and I hope to be able to receive it soon. This system would allow me to be much more independent as I wouldn’t have to consistently input my blood levels and manually work the insulin dripping into me through my pump. In the future, I’d love to volunteer at more Diabetes UK events and also help Diabetes Edinburgh grow even bigger!

This year I was lucky enough to attend ISPAD 2023 (International Society of Pediatrics and Adolescent Diabetes) in Rotterdam as a patient advocate (thanks to Dedoc Voices for the Scholarship!). Whilst I was there, I visited the Medtronic Diabetes stand, and learned about the new Smart MDI system. Medtronic Diabetes are well known in the diabetes community for their insulin pumps and CGM system, however they have now produced an exciting new technology which, in my opinion, could change the game of self-management of diabetes for individuals who don’t want to be/can’t afford to be on an insulin pump! The Medtronic Smart MDI system is a revolutionary diabetes management solution that seamlessly integrates the Simplera Continuous Glucose Monitoring (CGM) and InPen smart insulin pen (picture below), hopefully setting a new standard in precision and convenience. Unlike traditional Multiple Daily Injections (MDI), this system can offer users a consolidated view of real-time glucose levels and precise, dose-by-dose tracking of insulin administration. The Simplera CGM can eliminate the need for frequent fingerstick testing, while the InPen ensures accurate insulin dosing, reducing the risk of human errors  and having to remember whether you have already taken a dose! With the smartphone app, you can easily check personalised insights about your diabetes management, meaning that it is easier to make informed decisions about your diabetes. The mental burden of having diabetes is already high, and my hope is that having this system will make this burden easier to live with. Simplera CGM system compared with Guardian 4 sensor What’s different? Medtronic’s new Simplera CGM, used in the Smart MDI system, is the first major redesign of a Medtronic CGM. When compared with the Guardian 4 sensor, the Simplera CGM is half the size, and completely flat. Rather than the clamshell/mushroom shape of the Guardian 4 sensor, Simplera CGM is square, and can be worn on the back of the upper arm. There is also no overtape required, unlike the Guardian 4 sensor. Simplera CGM’s adhesive is made from anti-lint material and is designed to prevent sweat and water from reaching the sensor. All-in-one disposable device Unlike the Medtronic Guardian 4 Sensor, the Simplera CGM is a fully disposable CGM, with the sensor and transmitter combined into one device. The insertion process itself is a two-step process, making it easier/faster to insert. Side-note: A feature of the Guardian 4 sensor was its reusable transmitter and inserter, which is always something I admired about the Medtronic system, as it had less of an environmental impact. As someone with diabetes, I always worry about the impact that the single-use plastic from my CGM and insulin pump sets has on the environment. I am slightly disappointed that although the insertion may have gotten smoother and more convenient with the introduction of the Simplera CGM, Medtronic have chosen to create a new disposable product rather than perfecting the reusable equipment they already had. I spoke to a rep at the Medtronic stall about my concerns regarding the environmental impact, and was told that Medtronic takes steps to offset their environmental impact, however I wish that rather than taking steps to fix a problem you are contributing to, you try to tackle the problem from the start. What’s the same? There is still a 2-hour warm up time on the Simplera CGM. There is also a seven-day lifespan for the Simplera CGM, which is actually shorter than other CGMs on the market. The InPen Smart Insulin Pen With the InPen Smart Insulin Pen, you can deliver insulin the same as you would with a traditional MDI pen, however it means that you have more data about your dosing to help with your control. You can also use an i-Port Advance injection port with the InPen (pictured below), which helps reduce needle pokes by 93%. The app The InPen connects to a smartphone app, combining data from the Simplera CGM and using insulin data from the pen to recommend the right mealtime dose. The app offers a dosing calculator, dose reminders, carb counting support and has a digital logbook. The app will help you decide how much insulin to give, it automatically logs your doses, it will remind you to give your mealtime and background insulin (meaning no more forgetting!), and it also can show you how foods & activities affect your sugars. All this means that there is no more need of physically writing out a diary before clinic appointments as it will already be in the app! The Medtronic Smart MDI system sets itself apart from traditional MDI approaches by offering an integrated, technologically advanced solution that enhances precision, convenience, and overall diabetes management. As we compare these two approaches, it becomes clear that the Smart MDI system is not just a leap forward; it's a paradigm shift in how we approach and care for individuals living with diabetes. I, for one, am really excited for this system to become commonplace, and make diabetes easier to live with whilst also helping with self-management of diabetes! Note: I have no affiliations with Medtronic or anyone else in the Diabetes industry. I am also not a medical professional, and this is not medical advice. I am an individual living with diabetes, and this blog is for informational purposes only. Please speak to a medical professional prior to making any changes to your diabetes management. Sources https://www.medtronicdiabetes.com/products/inpen-smart-insulin-pen-system https://diatribe.org/simplera-cgm-approved-europe

Hello and welcome to 'Pumptastic Scot'. We have another guest blogger today, Lin May, who is an author and diabetes advocate, dedicated to raising awareness about LADA and supporting those on their journey with Diabetes. To learn more about her work visit https://lada-diabetes.com/ and https://insulinpumplife.com/, where she blogs. Read more to learn more about her story! Until next time, Alyssa x In 2013, my life took an unexpected turn when I was diagnosed with diabetes at the age of 30. The diagnosis itself was not straightforward; initially, I was misidentified as having Type 2 diabetes and prescribed Metformin, which worked at first, as I was in a honeymoon period, but over time that stopped working and other Type 2 diabetes medications also failed to work. This misdiagnosis was the beginning of my journey into the complex world of LADA (Latent Autoimmune Diabetes in Adults) – a slow-progressing form of diabetes, often considered a subtype of Type 1. Before this personal encounter, my understanding of diabetes was limited. Type 2 diabetes was somewhat familiar, thanks to a family member who had it. However, Type 1 diabetes, with its essential insulin treatments and associated costs, was a distant concept. The revelation that insulin pumps were not invasive devices, but rather external, precision tools for insulin management, was eye-opening not just for me, but for my family as well. The years following my diagnosis were a period of gradual acceptance and learning. Deciding to use an insulin pump marked a pivotal moment in my journey, profoundly improving my quality of life. The pump allowed for more flexibility in my diet and eliminated the need for multiple daily injections. It was not just a medical choice, but a step towards normalcy. My experiences led me to dive deeper into understanding diabetes. I explored the history of the disease, the evolution of insulin, and the intricacies of body chemistry. This quest for knowledge culminated in my book, "Success with LADA Diabetes: Achieving Optimal Health with Diet, Exercise, and Insulin". My aim was to guide others who might be struggling, particularly those who, like me, were misdiagnosed. Misdiagnosis can lead to a barrage of negative emotions – guilt, shame, frustration. It's crucial to understand that LADA is an autoimmune condition, where the pancreas is compromised, making insulin therapy essential. The misconception that lifestyle changes alone can control such a condition can lead to harmful self-blame. My advocacy now focuses on promoting correct diagnosis and understanding the nuances of LADA and Type 1 diabetes. One of the most empowering aspects of my journey has been discovering the supportive community surrounding Type 1 diabetes. Technological advancements, like hybrid closed-loop insulin pumps, have revolutionized treatment, offering new hope and ease of management. Now I use the Medtronic Minimed 780G Insulin Pump which has advanced features like auto corrections, making my life easier. My story underscores the importance of dispelling myths around diabetes. Type 1 diabetes, historically labeled juvenile diabetes, can indeed manifest in adulthood. It's imperative that we foster awareness, encourage proper testing, and support each other in seeking accurate diagnoses and effective treatments. As I continue my advocacy, my message is one of hope and resilience. Living with LADA or Type 1 diabetes presents challenges, but with the right knowledge, support, and technology, it's entirely possible to lead a fulfilling, healthy life. Let's break the stigma and embrace the journey together.

‘Everyone living with diabetes must have fair and equal access to the diabetes tech they’re eligible for’ In Scotland, in 2022, new guidelines led to a £14.6 million Scottish Government funding to increase access to hybrid closed loop technologies across Scotland. A campaign named “Diabetes Tech Can’t Wait” was started by Diabetes Scotland, with the aim of ensuring that the funding allocated to this vital diabetes technology is being put into action. The aim was that no matter where you live in Scotland, you can access the technology that will help you take control of your diabetes and live a happier and healthier life. Diabetes technology shouldn’t be a luxury for a few, it is vital for some individuals, and the aim of the campaign is to show decision-makers why everyone living with diabetes must have fair and equal access to the life-changing tech they’re eligible for and ensure that this funding that has already been allocated reaches everyone that needs it. The foundation of the campaign has been individuals living with diabetes sharing their lived-experience stories. This could be someone who has already had access to tech sharing how it has impacted their life, or someone who hasn’t been able to access it in their area. My story can be found here - https://www.diabetes.org.uk/tech-cant-wait/your-stories/alyssa, and you can see more of these lived-experience stories shared as part of the campaign here, as each and every story shared are extremely powerful - https://www.diabetes.org.uk/tech-cant-wait/your-stories. Diabetes Scotland launched a tool as part of the “Diabetes Tech Can’t Wait” campaign called the ‘Postcode Lookup’. In this tool, you can put in your postcode and find out the data on diabetes technology in your area in Scotland. The reasoning behind having this tool is that access to diabetes technology isn’t equal across all areas of Scotland and can be described as a ‘postcode lottery’, meaning that some postcodes are luckier and have better access. Once you put in your postcode it will show you the data on your area, and from there it gives you the option to sent an email to your local MSP (member of Scottish Parliament) to further campaign for fair and equal access to diabetes technology. Another aspect of the campaign was discussing the campaign in the Scottish Parliament. In Scotland, we have something called the ‘Diabetes Cross Party Group (CPG)’ which happens in the Scottish Parliament, and is co-chaired by MSP’s, one of which has type 1 diabetes themselves (Emma Harper MSP). Each CPG meeting has a different topic, and the last meeting on 21st June had a focus on access to diabetes technology to further campaign. An announcement was made at the CPG on 21st June that as a result of the ‘Diabetes Tech Can’t Wait’ campaign, a further £350,000 funding was allocated to speed up delivery of the previous £14.6 million allocated to implementing hybrid closed loop systems, and this funding will fund staff and training resources to ensure that individuals living with type 1 diabetes can access the diabetes technology, which is amazing! The crux of the campaign has been a collective effort of individuals with diabetes/their caregivers who have been tirelessly campaigning throughout this year. The ‘Tech Collective’, as they are named, have been meeting monthly, sharing their stories, contacting their MSPs and sharing the campaign with social media/local news, and they have been a vital part of the campaign. Today in the Scottish Parliament, there will be a reception for the ‘Tech Collective’ members, along with Members of Scottish Parliament and other important decision makers. The ‘Diabetes Tech Can’t Wait’ campaign/Diabetes Scotland will be launching its report discussing the importance of the campaign. It has been a pleasure to be a part of the ‘Diabetes Tech Can’t Wait’ campaign. In my opinion, access to diabetes technology (for those who want it and need it) falls under the human right of ‘right to adequate healthcare’, as it has been essential to my own diabetes journey, and having fair and equal access to this will be life changing to diabetes care in Scotland. I will share the ‘Diabetes Tech Can’t Wait’ report when it launches! Until next time, Alyssa x

Hello and welcome to 'Pumptastic Scot'! We have a guest blogger today, Michelle, who discusses her journey of training and competing in Strong Woman, and how she juggled training whilst living with type 1 diabetes. Until next time, Alyssa x Hello everyone! What an absolute pleasure it is to be writing a guest blog for Alyssa (the Pumptastic Scot). I met Alyssa back in July 2023 when I volunteered at my first Diabetes UK Summer Camp (FYI, if you are a type 1 diabetic and looking to give back to the diabetes community, then I strongly recommend this experience – it was life changing!) Me and Alyssa only had a few interactions at the camp (mainly team building / training sessions and conversations relating to our matching Fabletics leggings or her super cool Dexcom stickers), as we were in different groups, but I loved her warm and friendly energy – I’m hoping that I get to work with her in the future as I know we just click. So why did Alyssa ask me to guest blog? Well – a little fun fact about me is that I like to dabble in a bit of strong(wo)man training and competitions. That’s right, you read that currently. So, for all of those Eddie Hall, Brian Shaw, Hafþór Björnsson and Stoltman Brothers fans, you will know exactly what sport I am referring to. And for those of you who don’t, basically in a nutshell, I like to lift, carry, push, pull and throw objects that are maybe a little less mainstream to say your standard barbell or dumbbells. I’m talking cars, giant cement atlas stones, people, tyres, logs - the lot. I thought I would include some picture just for context, especially if you are a visual person like me! Axle floor to overhead reps - 50kg Tyre flip - 300kg I've always enjoyed exercise. Throughout my life, I've enjoyed spin and Les Mills classes - as well as dabbled in a bit of jogging and swimming too. But like many of us, I lost my motivation throughout lockdown which took its toll on my diabetes management, as well as my mental health and wellbeing. At the end of August 2020, I decided that I needed to regain control of the situation - especially with covid still lingering around and being vulnerable, so I joined a new gym! However, this gym was different to any gym I had been to previously. It had equipment that I had only seen on 'The World's Strongest Man' (like atlas stones, a yoke, logs and sandbags etc). After a few weeks of kettle bell classes, I won a free PT session in a prize draw and decided to give the strong(wo)man equipment a try. To say I fell in love with it is an understatement! Within a very short period of time, I booked weekly PT sessions and signed up for my first ‘Team’ competition which led to me competing in a further 8 competitions across the country. Although I love this type of training, it hasn't been an easy journey for me. I have found managing my blood sugars when exercising quite difficult at times and it has taken a lot of trial and error to work out what my body needs (whether that be insulin before resistance training or some carbs to prevent a hypo before more cardiovascular exercise or higher reps lower weight work). I often find that competition days are the worst – despite taking extra insulin, my blood sugars spike up to the 20’s (darn you adrenaline) – and then as soon as the competition is over, they regulate again and are back in range. And if I’m honest, I still haven’t quite cracked it. However, most of the work has gone into the mental strength and resilience of making sure that I have the mindset where my blood sugar levels don't define me - it's just data. Data that tells me that I need to adjust my carbs, dose amounts or timings. Managing to remove the emotional response to my blood sugars has been a game changer for me and allows me to fully immerse myself (as much as my diabetes will allow) into something that I enjoy. I guess the takeaway for this blog is to remind you all that diabetes doesn’t define you. Yes, it’s a full time job and can be so frustrating at times – but do the best that you can to manage it and if the numbers don’t reflect all of your hard work then you know what? That’s okay. There are so many factors which influence those numbers and as I have said before – they do not define you. So the takeaway is that these numbers are data – data that helps you to move forward and adapt (something we type 1 diabetics are already very good at!) If you have made it to the end of the blog then thank you so much for taking the time to read my guest blog and of course, thank you to Alyssa for having me 😊

Earlier this year, I saw a poster for research being completed on type 1 diabetes and disordered eating, and quickly signed up to take part, as it is a topic I am passionate about and have personal experience of. I quickly realised that the research was being conducted by Aisling Pigott, someone I have been a mutual on social media for a few years. Below, Aisling discusses her career and PhD research, the rationale behind the research and talks about how to get involved in the research! “As a Paediatric Diabetes Dietitian, I absolutely love working with children, young people and their families to help support them to live life to the fullest, nourish their bodies and self-manage their diabetes. When I started in this speciality in 2015, one of the big challenges I faced was supporting carbohydrate counting from diagnosis, which is best practice in Type 1 Diabetes, and something I’ve been passionate about implementing in my service. However, I was struck by the number of young people who had complex relationship with food, body, and insulin omission. I started to explore eating disorder access for these young people and found that it was overwhelmingly difficult to access services for these young people. There is lots of exciting work being done across Wales now to improve collaborative working across eating disorder teams and diabetes. I wanted to find out a bit more about how we can protect children and young people with Type 1 Diabetes from developing complex relationships with food and body and was really lucky to receive some funding from RCBC Wales to start my PHD. The first phase of my research is to explore what the lived experience of Type 1 Diabetes and Disordered Eating can add to our current understanding. My early literature review found lots of interesting associations between Type 1 Diabetes and Disordered eating, but much of the literature in this area is expert opinion. There was not research available that explored the voices of the real experts- people with Type 1 Diabetes and disordered eating. I’ve absolutely loved hearing from the real experts in this area, people with Type 1 Diabetes and a history of disordered eating. I truly believe that we (as HCP’s) have so much to learn from their voice, and expert opinion). My early observations of the data are that future interventions may need to consider a parenting and young person intervention – as well as some support around weight stigma for paediatric diabetes health care professionals. I have recruited and interviewed 11 participants so far, and unfortunately recruitment has slowed down.” The link to sign up as a participant to help Aisling with this all-important research project is - https://cardiffmet.eu.qualtrics.com/jfe/form/SV_00bQY3jnRpEeFg2. There is eligibility criteria for the research, which is: individuals who received diabetes care in the United Kingdom during childhood and have experienced disordered eating. You are ineligible to take part is you have experienced any of the following in the past 2 years: Intense fear of gaining weight, or body image concerns or fear of insulin promoting weight gain Recurrent restriction of insulin to prevent weight gain. Insulin restriction, eating or compensatory behaviours that cause harm to health, diabetes distress or impairment on daily function) Please consider helping Aisling with her PhD research if you meet the criteria, research studies like this are pivotal to future diabetes care, particularly in this topic where care needs to be increased! Until next time, Alyssa x p.s. If you would like to be a guest blogger, please don't hesitate to get in touch via my social media!