Diabetes & Hashimoto’s – by Alondra Zambrano

As we approach World Diabetes Day, Alondra, the voice behind @type1latina, gets real with us about her experience as a woman of color living with multiple chronic conditions, including type 1 diabetes, Graves’ disease, and Hashimoto’s disease. Check out her postcard in English and Spanish!

Read in English:

I’ve had type 1 diabetes for 19 years, since I was five years old. Around 2006, I was diagnosed with Graves disease. My thyroid was overactive. The details are unclear to me, but I remember knowing that I would have to take pills everyday. Later in high school, my story got a bit more complicated. I went from having Graves disease to having Hashimoto’s disease. Two different autoimmune diseases that affect the thyroid, plus living with type 1 diabetes. 

Type 1 diabetes is heavy: being a pin cushion, losing sleep because of low or high blood sugars during the night, fear of dying during my sleep because of a severe low blood sugar. Adding Hashimoto’s disease to the equation makes it a bit more difficult.

Even though dealing with Hashimoto’s disease is easier than dealing with type 1 diabetes, both autoimmune diseases are challenging. Last December, I had my thyroid levels checked by my endocrinologist. My lab results showed that my thyroid was overactive because the dosage was too strong. We made adjustments to the dosage and agreed to check my thyroid levels at my next appointment.

From juggling two jobs, to traveling to Australia to visit one of my best friends, it was a crazy couple of months. Throughout this time, I was always extremely fatigued at school and work. I had muscle aches and always had bags under my eyes. My weight fluctuated despite a lot of activity. When I finally had my appointment in August, my lab results showed that my thyroid level was underactive. All of my symptoms made sense – and I had let eight months pass between appointments without checking my thyroid levels.

There are days where I just want to quit caring about my health. But what resonates with me is something my mom always tells me: “Without your health, you don’t have anything.” 

That is one of the reasons why I created my Instagram account, @type1latina: I want to share my journey as a Latina who is affected by type 1 diabetes. Every journey, every culture, and every story is different.  There is something beautiful about connecting with others who share the smallest commonality with you, like dealing with the same health conditions. It brings comfort. It brings unity.
 
As a person of color, I felt very alone in this T1D journey because for most of my life I was the only person of color I knew with type 1 diabetes. Now that’s changing, and I absolutely love that. There are things that I still have to accomplish, things I need to do – so my health is my everything, and I know I’m not alone.

Follow Alondra on Instagram: @type1latina

Leè en español:

He tenido diabetes tipo uno por diecinueve años, ya que ha los cinco fui diagnosticada. Después aproximadamente en el 2006 me diagnosticaron con la enfermedad que se llama Graves. Mi tiroides estaba hiperactiva, no me acuerdo claramente de mas detalles pero supe que iba tomar pastillas para la tiroides. Cuando estaba cursando la secundaria, mi historia se complico porque detener la enfermedad de Graves me diagnosticaron con la enfermedad de Hashimotos. Dos enfermedades diferentes que afectan el sistema inmunológico y la tiroides, mas aparte viviendo con diabetes tipo uno.
 
Vivir con diabetes tipo uno es una carga muy pesada ya que tengo que estarme picando mi cuerpo constantemente, interrumpir mis sueños porque mis niveles de glucosa fluctúan constantemente especialmente en la noche y eso me causa miedo porque puedo morir si tengo un episodio de hipoglucemia. Sin olvidar que tengo la enfermedad de Hashimoto hace que mi salud tenga mas dificultades.
 
Aunque tener la enfermedad de Hashimoto es mas fácil que tener diabetes tipo uno, las dos enfermedades son difíciles. El pasado Diciembre, mi doctor de endocrinología me reviso los niveles de mi tiroides. Los resultados mostraron que mi tiroides estaba hiperactiva porque la dosis de mi pastillas era muy fuerte. El doctor ajusto la dosis y me dijo que me iba a mandar a el laboratorio para que me revisaran los niveles de la tiroides en la siguiente cita, en tres meses.
 
Trabajando dos trabajos y viajando ha Australia ha visitar ha una de mis amigas, fueron unos meses muy ocupados para mi. Durante este tiempo, estaba extremadamente fatigada en la escuela y en el trabajo. Me dolían mis músculos y siempre tenia muchas ojeras. Mi peso variaba. Y al final tuve mi cita con mi endocrinólogo en Agosto y los resultados de laboratorio enseñaron que me tiroides estaba hipoactiva. Ahora entendí todos mis síntomas ya que deje ocho meses pasar sin revisar en el laboratorio los niveles de mi tiroides.
 
Hay días que quiero dejar de cuidar de mi salud. Pero razono porque me acuerdo de lo que mi Mamá siempre me dice: “Sin salud no podemos hacer nada.”
 
Esta es una de las razones que creé mi cuenta de Instagram, @type1latina: quiero compartir mi viaje como Latina afectada por diabetes tipo 1. Cada viaje, cultura, e historia es diferente. Hay algo muy hermoso cuando nos conectamos con otros para compartir las cosas mas pequeñas hasta las mas grandes con las que lidiamos con nuestras condiciones de salud. Te brinda comodidad y unidad.
 
Como persona de color, me sentí muy sola en este viaje con mi diabetes tipo uno porque en ese tiempo yo era la única persona de color con diabetes tipo uno, no había otra persona de color con diabetes tipo uno. Me he dado cuento que esto esta cambiando y me da gusto que la gente de color se involucre en su enfermedad. Para mi hay cosas que me faltan hacer y a completar y por esas razones mi salud es todo para mi.  Y lo mas importante, no estoy sola en mi viaje con diabetes tipo 1.

En Instagram: @type1latina

Diabitess

Join us for our next Beta Change Minisode with Sena Yüzgeç, environmental engineering student, designer of the SeYu collection, and creator of Diabetsese! Sena has been living with type 1 diabetes for over 10 years and will be joining us from Turkey. 

Don’t forget to follow her on Instagram: @Diabitess and check out the Global Postcard she wrote for us here.

Small business serves diabetes community in Lithuania – by Aušra Gaudiesiene

Diabetes can be a blessing in disguise. For Aušra, she never thought that her son’s type 1 diabetes diagnosis would lead to a small business that brings hope and positivity to the diabetes community. Read her story in English and Lithuanian.

Hello everyone! I am from Klaipeda, Lithuania. My family’s journey with type 1 diabetes started two years ago when our eldest son, Germantas, was diagnosed in 2017, when he was three and a half. 

The first few months were difficult for our family. It took time for us to accept life with diabetes, but at the same time we knew we had to stay strong and not give up. We came to realize that it’s just a way of life, even if neither our son nor our family chose it. Since we are pushed to deal with type 1 diabetes and the struggles related to it, we made a choice to make an impact on this condition that affects all of our lives.

Germantas got started on an insulin pump and CGM very quickly – one month after his diagnosis. As we prepared for his return to preschool, we began to look for an insulin pump pouch or belt, a bag for his diabetes stuff, and a medical alert bracelet. Unfortunately, we were faced with a lack of diabetes accessories in Lithuania, especially for children. We could not find anything appropriate and beautiful for our son. After this sad experience, we decided to take it upon ourselves to introduce much-needed accessories and other items to our friends in the diabetes community. This is how, just one year ago, our family project MURKA.LT was born. 

MURKA.LT is the first specialized online store that provides various diabetes accessories and healthcare supplies for the diabetes community in Lithuania. I am the manager and a creative mind behind MURKA.LT, so I’m constantly looking for the products and ways which could make life with diabetes better for Germantas and other people. I work alongside my son to test all of our products before we sell them through MURKA.LT. Germantas is the primary (and best!) critic who helps me to choose which products are the most appropriate and necessary for people with diabetes. Thanks to his insight, I have presented many beautiful and useful things to my son and our diabetes community, such as special clothes and pouches for insulin pump users, unique bags for insulin and diabetes supplies, medical alert bracelets, and more.

Like every family impacted by type 1 diabetes, we deal with its effects every moment, so we deeply know how important it is to lend a brightness and strength to everyday life with health issues. By managing the MURKA.LT project, I’ve been afforded an opportunity to spread awareness about diabetes, teach others about what a serious chronic disease it is, and communicate why and how it needs to be understood and recognizable. This project also provides support to others, especially families of newly diagnosed children, by sharing our family’s experiences along with tips on conquering challenges with raising a kid with type 1 diabetes. 

Germantas is also very open and does not hesitate to talk about type 1 diabetes or demonstrate his diabetes devices and accessories to others. Although he is now only five years old, from the day of diagnosis he has done so much to raise awareness around type 1 diabetes. I am so proud of him, and he keeps me strong throughout our family’s journey, especially with our family project.

You are welcome on our online store MURKA.LT! We are always open for partnership, and if you see anything you think we should be producing, do not hesitate to reach out.

Join us on social media to get the latest updates and keep in touch! 

Facebook: @MURKA.LT
Instagram: @murka.lt

Sending all the best wishes to the Beta Change community from the MURKA.LT family! 

Skaitykite lietuviškai:

Aušra, 1 tipo cukriniu diabetu sergančio berniuko mama, projekto MURKA.LT įkūrėja, dalijasi savo šeimos istorija, kaip jiems pavyko rasti vilties ir pozityvumo po to, kai jos trejų metų amžiaus sūnui Germantui buvo diagnozuotas 1 tipo cukrinis diabetas.  Pamatykite jos atvirutę anglų ir lietuvių kalbomis!

Sveiki visi!

Aš esu Aušra Gaudiešienė, ir gyvenu  Klaipėdoje, Lietuvoje. Mano šeimos kelionė su 1 tipo cukriniu diabetu prasidėjo prieš dvejus metus, kai mūsų trimečiui berniukui Germantui buvo nustatyta cukrinio diabeto diagnozė.
Pirmieji mėnesiai mūsų šeimai buvo sunkūs. Prireikė laiko, kad susitaikytume su cukriniu diabetu, tačiau kartu žinojome, kad turime nepasiduoti  ir išlikti stiprūs. Supratome, kad diabetas turi tapti gyvenimo būdu, net jei nė vienas iš mūsų šeimos, tuo labiau Germantas, to savo noru nesirinkome. Todėl, kad jau buvome priversti su tuo susigyventi, nusprendėme imtis visko, kad sūnaus ir mūsų šeimos gyvenimas su cukriniu diabetu taptų lengvesnis ir paprastesnis.

Labai greitai, praėjus vos vienam mėnesiui po cukrinio diabeto diagnozės, Germantas pradėjo naudoti insulino pompą ir nuolatinį gliukozės matuoklį. Susidraugavę su insulino pompa ėmėme ruoštis Germanto grįžimui į darželį ir pradėjome ieškoti diržo ar maišelį, į kurį galėtume įdėti insulino pompą, dėklo reikalingoms cukrinio diabeto priemonėms susidėti  ir diabeto identifikavimo apyrankės. Deja, susidūrėme su cukrinio diabeto priemonių, ypač skirtų vaikams, trūkumu. Negalėjome rasti nieko tinkamo ir gražaus sūnui. Po šios liūdnos patirties nusprendėme imtis ir pasirūpinti cukrinio diabeto priemonių, aksesuarų ir kitų diabeto priežiūrai reikalingų dalykų pristatymu į Lietuvą. Ir štai taip, prieš vienerius metus, gimė mūsų šeimos projektas MURKA.LT.

MURKA.LT yra pirmoji specializuota internetinė parduotuvė, pristatanti įvairias cukrinio diabeto ir sveikatos gerinimo priemones sergančiųjų diabetu bendruomenei Lietuvoje. Aš esu MURKA.LT vadovė ir kūrybinis protas, todėl nuolat ieškau produktų ir būdų, kurie galėtų pagerinti gyvenimą su cukriniu diabetu Germantui ir kitiems žmonėms. Kartu su sūnumi išbandome produktus, prieš nuspręsdami juos pristatyti ir kitiems žmonėms. Germantas yra pagrindinis (ir geriausias!) kritikas, padedantis man išsiaiškinti, kurie produktai yra tinkamiausi ir reikalingiausi diabetu sergantiesiems. Tik dėka Germanto, jam pačiam ir mūsų sergančiųjų diabetu bendruomenei galėjau pristatyti daug gražių ir naudingų dalykų, tokių kaip specialūs drabužiai su integruotomis kišenėmis ir maišeliai insulino pompų naudotojams, izoterminiai dėklai ir šaltkrepšiai insulinui bei cukrinio diabeto priemonėms, cukrinio diabeto identifikavimo apyrankės ir dar daugiau.

Kaip ir kiekviena šeima, kurios gyvenimas siejasi su 1 tipo cukriniu diabetu, kiekvieną akimirką susiduriame su šios ligos sukeliamais iššūkiais. Todėl labai gerai žinome, kaip svarbu kasdieniam gyvenimui suteikti žvalumo ir stiprybės sprendžiant iškylančias sveikatos problemas. Mūsų šeimos projektas MURKA.LT man ir mūsų šeimai suteikia galimybę skleisti supratimą apie diabetą, dalintis svarbia žinia apie tai, kokia tai yra sunki ir pavojinga lėtinė liga, bei kodėl ir kaip ją reikia suprasti ir atpažinti. Taip pat šis projektas man suteikia galimybes paremti kitus, ypač naujai susirgusių diabetu vaikų šeimas, dalijantis mūsų šeimos patirtimi ir patarimais, kaip įveikti iššūkius auginant 1 tipo cukriniu diabetu sergantį vaiką.

Germantas taip pat yra labai atviras ir nesidrovi kalbėti apie 1 tipo cukrinį diabetą ar demonstruoti kitiems savo insulino pompą ir kitus diabeto prietaisus. Nors jam dabar tik penkeri metai, jis padarė daug, kad padidintų supratimą apie 1 tipo cukrinį diabetą. Aš juo labai didžiuojuosi, o jis man padeda išlikti stipria šioje mūsų šeimos su diabetu kelionėje, ypač įgyvendinant mūsų šeimos projektą.
Esate laukiami mūsų internetinėje parduotuvėje MURKA.LT! Mes visada esame atviri partnerystei ir, jei pamatysite ką nors, kuo jūsų manymu turėtume pasidalinti, nedvejodami susisiekite. Prisijunkite prie mūsų socialiniuose tinkluose, kad gautumėte naujausius pranešimus  ir galėtume palaikykite ryšį!

Facebook: @MURKA.LT
Instagram: @murka.lt 

Siunčiame geriausius linkėjimus Beta Change bendruomenei nuo MURKA.LT šeimos!

Igniting My Diabetes Advocacy Fire – by Bianca Grima

Bianca has only recently been diagnosed with diabetes, but you shouldn’t underestimate her. Seeking to bust diabetes myths, she has taken to YouTube with her video to help fight diabetes stigma. We love her optimism and positive attitude to life with diabetes and can’t wait to see where her diabetes advocacy takes her.

My name is Bianca, I’m 17 years old, and I was diagnosed with type 2 diabetes in June 2019. I am insulin dependent. Despite my diagnosis still feeling fresh, I have already had to learn and adjust as diabetes has completely changed my life. Everything is different because diabetes is much more than just watching the food we eat. It’s also about knowing when your body has had enough. Listening to your body is something I think we must all learn to do; if not, they’ll crumble. But I’m not going to lie and say the stigma hasn’t gotten to me. 
 
It wasn’t long ago that I sat there after being told I had diabetes. Deep down, I felt as if I’d done something wrong and guilty like it was my fault. It’s important to acknowledge that a lot of this stigma can subconsciously come from ourselves. It’s easy to beat ourselves up and we’d never treat someone else the way we treat ourselves. So I think it’s important to take the first step into this journey and love yourself. It’s not easy and it won’t happen overnight, but I promise that self-love can banish the stigma we hold on ourselves. Sadly there will always be people out there that stigmatise illnesses as sometimes it’s just easier for people to assume things about diabetes. For example, some people think diabetes is due to eating the wrong foods or being overweight. In reality, no matter what the cause of diabetes is, no one chooses it, and no one should feel like it’s their fault. 
 
The best way we can fight this stigma is through education. So next time someone tries to tell you about the new cure for diabetes they saw on the news or that you should try kale juice, don’t feel defeated. Instead, politely thank them for showing they care then educate them. Tell them that if and when they ever find a cure, your doctors will be the first to tell you, and that if kale juice was enough we’d have done it. And say it with kindness to educate those around you and hopefully they’ll educate the people around them. This is the step to creating an understanding and breaking down the stigma.

Diabetes is just one piece of me, and I’m made up of a million pieces. Some days diabetes gets me down but I promise you I will wake up every day with a plan to change this world and my diabetes will not get in the way. I want to educate and raise awareness on what diabetes is and who it affects. Diabetes doesn’t just affect me, my mum and nan both have type 1 diabetes, which makes it very close to my heart. Diabetes can sometimes feel like a curse, but I have never been healthier and happier than I am today. In many ways, this diagnosis has set me free. It gave me a purpose.
 
I’ve always loved using my voice; I like creating interest and watching people learn. Deciding to become a diabetes advocate is where I have found a passion. After my diagnosis, I almost instantly felt I had a new-found mission to spread awareness and educate others on diabetes. I love helping others and also create content and spread awareness on mental and physical health so I feel as if this is my next step.  I am currently creating YouTube videos about my diabetes journey and showing what diabetes is and how I live with it. 
 
We were put on this earth to create something lasting, and nothing lasts longer than knowledge and inspiration.

My Diabetes Advocacy Journey – by Lea Raak

Our next global postcard comes from Germany, where we hear Lea’s story on her diagnosis and how she launched herself into diabetes advocacy. Check out her blog at Insulea and follow her on Instagram at @insulea.de! Lea shared her story with us both in English and German – enjoy!

I was diagnosed with type 1 diabetes while I was an exchange student in the United States. I felt sick for a couple of months, but the doctors didn’t believe in my symptoms, they said I was just homesick and had the flu. It came to a point where I was too weak to even stand in the shower, let alone walk for more than a couple of minutes. In the States I didn’t get treatment, just basal insulin after they finally diagnosed me with type 1. I decided to fly back home to Germany, but this experience left it scars. I developed anxiety and depression.

My diagnosis and the ongoing mental health struggles shaped my life in many ways. They made me realize even more that life is precious and you never know how much time you have left. This made me give myself a promise: Living life by being exactly who I am and want to be, doing what I love, not caring about what other people would think of me. I fought a lot of battles with my diabetes and anxiety for a long time, but my determination and strong willpower eventually overcame most of my struggles. Once I got better, I started to step up and advocate for the things that are important to me: awareness for diabetes and mental health, diversity, inclusion, and human and animal rights.

In 2014 I started my blog, “Insulea,” pouring my heart out about my daily life with type 1 diabetes and my mental health. Soon the articles I wrote got a lot of attention and I was invited to various diabetes conferences in Europe such as ATTD and EASD, meeting up with pharma companies to help them get a patient’s view for their products. I love that I have the opportunity to be a voice for other people with diabetes and therefore help to shape our future! 

Last year I attended a summer camp from the European Patient Forum together with young advocates that have a chronic condition as well. I loved networking with interesting people from all over Europe, opening my eyes that we in the diabetes community are not alone! People with health conditions should all work together to get the best results when it comes to health care! I want to get more involved in offline projects and politics, which was why I applied to become a Young Leader in Diabetes Trainee for the International Diabetes Federation. I luckily can announce that I’m part of the next program and I’m excited for the opportunities it will bring me!

There are loads of ideas in my head that are just waiting on me to release them. So stay tuned…more to come!

Auf Deutsch Lesen:

Ich bekam die Diagnose Diabetes Typ 1 während meines Auslandaufenthaltes in den USA. Da war ich bereits einige Monate krank, fühlte mich schlapp. Die Ärzte trauten meinen Symptomen nicht und erzählten mir anfangs, es seien nur Grippe und Heimweh. Irgendwann ging es mir so schlecht, dass ich sogar zu schwach war, um im Stehen zu Duschen oder mehr als ein paar Minuten zu gehen. Nachdem ich diagnostiziert wurde, bekam ich dennoch nur Basalinsulin und entschloss mich dazu, nach Deutschland zurückzukehren. Diese Erfahrungen haben seelische Narben hinterlassen. Ich entwickelte eine Angststörung und hatte Depressionen. 

Die Diagnose und meine psychischen Probleme haben mein Leben geprägt und verändert. Mir ist jetzt bewusst, wie fragil das Leben ist und wir nie wissen können, wie lange wir noch haben. Nach der Diagnose habe ich mir selbst ein Versprechen gegeben: Genau so zu leben, wie ich es möchte. Immer ich selbst sein und Dinge tun, die ich liebe. Egal, was andere Menschen davon halten würden. Ich habe lange gegen meine Angsterkrankung und die Depressionen gekämpft, meine Willenskraft und Ausdauer haben gesiegt. Heute lebe ich angstfrei und mit sehr wenigen schlechten Phasen. Seitdem es mir besser geht habe ich angefangen, mich für die Dinge einzusetzen, die mir am Herzen liegen. Menschen über (m)ein Leben mit Diabetes zu informieren und als Patientenvertreterin anderen Menschen mit Diabetes eine öffentliche Stimme zu geben.

Seit 2014 tue ich das mit meinem Blog Insulea, auf dem ich über mein alltägliches Leben und die Schwierigkeiten mit Diabetes und meiner Psyche berichte. Ich liebe es, dass ich damit einen Teil für eine bessere Zukunft (was Diabetes angeht) beitragen kann. 

Im letzten Jahr habe ich meinen Horizont durch eine Teilnahme bei einem Sommercamp des European Patient Forum (EPF) erweitert und dort viele Menschen mit unterschiedlichen chronischen Erkrankungen aus ganz Europa getroffen. Ich denke, dass es sehr wichtig ist, sich so zu vernetzen! Um auch in Projekten offline Fuß zu fassen, habe ich mich als Young Leader in Diabetes bei der Internationalen Diabetes Vereinigung (IDF) beworben. Ich darf glücklich verkünden, dass ich nun Teil des nächsten Programms sein werde und ich bin sehr gespannt auf die Möglichkeiten, die sich mir dadurch öffnen werden!

In meinem Kopf geistern sehr viele Ideen herum, die ich unbedingt umsetzen möchte! Also bleibt dran, ihr werdet wieder von mir hören!

My Pregnancy with T1D – by Kayla O’Connell

There is a myth that exists around women with diabetes not being able to have a healthy baby, which makes stories like Kayla’s all the more important. In this Global Postcard from Canada, Kayla shares the ups and downs on managing her pregnancy with type 1 diabetes. 

In the same year that I celebrated living ten healthy years with type 1 diabetes, I celebrated our soon-to-be here baby boy. While I wish those two were two separate entities that never collided or came up in the same conversation – that isn’t the case. When I look back ten years ago, when I was diagnosed with type 1 diabetes at almost nineteen years old, I recall a very specific question, “Can I still have a baby with type 1 diabetes?” while the answer was “Of course!” I realize now they did not elaborate on how much diabetes plays a role in pregnancy. 

I knew that diabetes was going to be a challenge, because frankly it is a challenge even without pregnancy.  The biggest difference is that now your blood sugars have an even deeper connection to your emotions.  As soon as I see that my blood sugars are trending up, I panic.  Not in the way I’d dread before and then resume on with whatever I was doing, but in a way that I now felt incredibly guilty. I felt as though I was doing something to harm or that it was completely my fault when really, all of us with type 1 diabetes know, diabetes does whatever diabetes wants to do.

I need to thank technology because without diabetes technology, this would be much harder.  I don’t even want to know how many injections I would have taken by now if I was on multiple daily injections (MDI). To all the type 1 ladies that came before me and had babies without diabetes technology, my hat goes off to you!

My first trimester was quite “easy” because at most I was having quite a few lows that were easily corrected with juice boxes.  I likely drank as many juice boxes as a child’s entire year of preschool in that first trimester, but fixing lows was quite easy to do. They were also manageable lows, thankfully. As time has progressed and my baby boy has gotten bigger, my insulin needs have greatly increased and when I say greatly increased, I mean I am taking as much insulin as I would imagine a large, large, large man would take. Diabetes has most definitely gotten a bit harder to manage, as compared to just sipping on juice boxes throughout the day. I’ve still managed to keep a desirable A1c that I am praised by the doctors for, but all the praise in the world, and I still have moments where I can’t get some stubborn blood sugars to drop as fast as I’d like. 

I’m now in my third trimester. The best part of all of this hard work, of course, is that I would do anything for this little baby of mine.  I will take all the insulin I need, check as many times as I need, wait as long as I have to in the waiting rooms to see the specialists, I will do whatever it takes. 

Follow Kayla’s blog for more stories about her life with type 1 diabetes: www.kaylaslifenotes.com

Keeping Diabetes Advocacy Positive in China – by Rui Zhang

Adam is a powerhouse of a diabetes advocate in China and we were lucky to meet him to learn more of his projects as part of the Medtronic Bakken Award earlier this year. Check out his story in English and in Chinese!

Hi, everyone. I am Rui Zhang from Beijing, China. I was diagnosed with type 1 diabetes when I was nine years old and now it has been 17 years. First of all, I should thank my family and friends. The care and tolerance for me has enabled me to face diabetes with positive and optimistic attitude. For 17 years, I have regarded diabetes as my good friend. I think it can bring me a more self-disciplined lifestyle, help me resist the temptations in the bustling world, and let me have a healthy body and a mature mind.

In China, there are more than 100 million people with diabetes, and nearly 10 million of them have type 1 diabetes. According to incomplete statistics, in recent years, the age of onset of type 1 diabetes has a tendency to become younger and younger. I was diagnosed with diabetes when I was 9 years old. So I know that in the stage of growing up from a teenager to a young person, people with diabetes face psychological and physical challenges. Therefore, I am currently working on the medical and social problems faced by adolescents and young people with type 1 diabetes to help them live a happier and healthier life.

My exposure to my diabetes circle started in my sophomore year. Under the guidance of my uncle (a diabetes worker), I was fortunate to join the Beijing Diabetes Prevention Association and met with many outstanding people including Mr. Chen Wei, the director of BDPA, He Daoxin, the secretary general, and Zhang Qi, an excellent leader. Under their recommendation, on the opening ceremony of the 6th United Nations Diabetes Day in Beijing, I delivered a speech about my experiences. Through this event, I was able to enter the circle of patients with type 1 diabetes and met many patients. Through this process, I gradually realized that in our diabetes community, there are many patients with poor blood sugar control or negative mentality. To some extent, this is because Chinese society does not have enough knowledge of the diabetes community.

On the one hand, many people with type 1 diabetes have insufficient awareness of self-management, resulting in unsatisfactory blood sugar control; On the other hand, type 1 diabetes is generally younger in age. During their growing process, they will continue to face social pressures from family, school, work, etc., which would render them form a hidden emotional problem and lead to their loneliness, lack of self-confidence, the idea of escaping from the crowd and so on.

After witnessing many cases of psychological problems caused by their unrecognized social status, I decided to stand up, hoping to increase the society’s awareness of the diabetes community by participating in some public activities and publicity. Despite a lot of pressure, I have never been afraid to tell others that I live with diabetes.

For example, in 2014, I was involved in the filming of a documentary about type 1 diabetes in the CCTV Population section named People Hidden on Isolated Island. This is a nation-wide program, in which I have the courage to tell my story and social problems and psychological pressures faced by this group, so as to appeal to the society for the concern of this special diabetes community. In the same year, I also participated in the “Beijing Marathon Public Welfare Run” jointly organized by the Chinese Medical Association and the Beijing Diabetes Prevention Association. I hoped to show the healthy image of people with diabetes by participating in marathon. Although we only completed the distance of 5km, we successfully demonstrated the positive image of our hard work. At the same time, I also hoped that by sharing the stories of me and excellent friends around me, I could establish a healthy and optimistic image to my diabetes companions and help some patients who are still inferior and autistic to get out of the haze. For example, I submitted my own story to the Chinese diabetes magazine called Friends of Diabetes, and I was honored to be the cover person of that issue; I also cooperated with the business unit of Medtronic China to share those optimistic stories of patients who are optimistic about diabetes to more and more people.

I have established a small-scale public welfare group with a few friends with diabetes, hoping to improve the blood glucose management and mental health through mutual help and mutual encouragement among people with diabetes. We have held a number of exchanges for patients with type 1 diabetes. We invited experts and some diabetics to share some blood glucose control experiences and methods. And we also went to the outdoors for hiking, picnicking, picnics and other activities. For example, in the beautiful autumn in October 2018, we brought some people with diabetes to go for a hike in the suburbs of Beijing, and arranged some education around blood glucose management for them to consider during the hike, so everyone can learn some knowledge as well as exercise. In order to make the activities more educational and helpful, I also strive to improve my knowledge of blood glucose control and diabetes management, and I participated in the 2016 Annual Symposium Diabetes Education and Management of Chinese Diabetes Society organized by the Chinese Medical Association Diabetes Branch. In 2018, I also joined the classes of blood glucose control and management.

Among many activities, what impressed me the most was the “Youth Health Summer Camp” organized by Beijing Children’s Hospital. I participated as a volunteer and communicated with young people with diabetes from Beijing, Shanghai, Hong Kong and Taiwan. The sweetness, innocence and self-reliance of them deeply touched me. They brought me a lot of happiness, and also inspired me to live a better life. Through this activity, I also met the parents of young people with diabetes. When communicating with them, I knew that they bear a lot of pressure and painstaking in order to let their children grow up without the bother of any worries. From then on, I am determined to help these young people with diabetes and their parents through sharing my experience, to help them grow better and relief those parents’ pressure.

We named our team as “The Smurfs”, because blue symbolizes life and health, and we hope that we can fight against diabetes bravely like the Smurfs fight against Gargamel. I believe that through our joint efforts, we can live happily under the blue sky, just like the Smurfs.

Hi,大家好。我是张睿,来自中国北京,我在九岁时被确诊为1型糖尿病,如今患病已经17年~
首先应该感谢我的家人和朋友。他们对我的照顾和包容,让我始终能以积极乐观的态度面对糖尿病。17年间,我将糖尿病视为我的好朋友,我认为它能带给我更自律的生活方式,帮助我抵抗住繁华世界中种种诱惑,令我拥有健康的身体和成熟的心智。

在中国,糖尿病患者超过1亿人,而其中1型糖尿病患者有将近1000万,而近几年中,据不完全统计,1型糖尿病的发病年龄有青少年化的趋势。我是9岁时被确诊为糖尿病的,发病年龄较小,深知从少年成长为青年的阶段中,糖尿病患者在心理和身体上所受的双重考验。所以我目前致力于研究青少年和青年的1型糖尿病患者遇到的医疗问题和社会问题,帮助他们更快乐和健康的生活。

我接触到糖尿病的圈子是在大二时。当时在姨父(一名糖尿病工作)的引领下,我有幸加入了北京糖尿病防治协会,认识了糖协理事长陈伟老师、秘书长何道新、糖友领袖张琪等人。在他们的引荐下,在第六届联合国糖尿病日北京站开幕式的舞台上,我发表了一场演讲,演讲内容围绕自己的患病经历。通过此次活动的契机,我得以走进了1型糖尿病患者的圈子,认识了许多患者。在此过程中,我逐渐意识到,在我们的糖尿病社区中,存在着很多血糖控制的不好,或者心态消极的患者。某种程度上,这是因为中国社会上对糖尿病群体的认知程度不够,一方面导致很多1型糖尿病人,在自我管理方面的认知程度上还不够,造成了血糖控制不理想;另一方面,1型糖尿病普遍发病年龄较小,在他们的成长过程中,会不断面临着来自家庭、学业、工作等种种社会压力,形成一种隐性的情感问题,导致他们的不自信、孤独以及对逃避人群等。

在目睹了很多因为社会身份不受认可,而产生心理问题的案例后,我决定站出来,希望能通过参与一些公众视野下的活动和宣传,提高社会对糖尿病这一群体的认知程度。尽管有很多压力,但我从未害怕过告诉别人我是一名糖尿病患者的身份。例如,2014年,我参与拍摄了CCTV《人口》栏目的“一型糖尿病患者”的纪录片:《隐藏在孤岛上的人们》。这是一档面向全国观众的节目,我鼓起勇气,讲述了自己的生活,反应了这个群体所面临的社会问题,以及遭受的心理压力,借此在节目中呼吁社会对1型这一特殊糖尿病群体的关注。同一年,我还参加由中华医学会和北京糖尿病防治协会共同举办的“北京马拉松公益跑”,希望能通过参加马拉松赛,展示糖尿病人的健康形象。我们虽然在活动中只完成短短的5km的赛程,但也成功的展现了我们努力训练的积极形象。与此同时,我还希望能通过分享我和身边杰出糖友的故事,为糖尿病同伴树立健康、阳光的形象,帮助一些尚处在自卑、自闭的病友走出阴霾。例如,我将自己的故事投稿在中国糖尿病杂志《糖尿病之友》,并很荣幸的成为了那一期的封面人物;我还与美敦力中国大区的事业部合作,通过他们的平台,像更多人分享乐观面对糖尿病的患者故事。

我和几名糖尿病患者朋友成立了一个小规模的糖尿病患者的公益团体,希望能通过患者之间的互相帮助、互相激励,增进彼此的血糖管理和心理健康。我们举办了许多场1型糖尿病患者的交流会。我们会邀请专家、糖友为大家分享一些控糖经验和方法;也会带领糖友们来到户外,进行徒步、郊游、野餐等活动。例如,2018年10月,在美丽的秋天,我们组织糖友来带北京郊区的户外进行徒步活动,并给糖友们布置了一些血糖控制和学习的问题,让大家在徒步活动中思考问题、解决问题。为了能给糖友们带来更有意义的教育和帮助,我也努力提高自己对控制血糖和糖尿病管理的知识。参加了中华医学会糖尿病学分会举办的“2016年教育管理研讨会”(2016 Annual Symposium Diabetes Education and Management of Chinese Diabetes Society),2018年还加入了血糖控制和管理的班等等。

 在众多活动中,让我印象最深的是参加儿童医院组织的“青少年健康夏令营”。我以志愿者的身份参加,与来自北京、上海、香港、台湾四个地方的小糖友交流和沟通,小糖友们的可爱、天真和自强自立让我深受感动,带给我许多快乐记忆,也激励了我更好的成长。同时,通过这个活动,我认识了许多小糖友的父母,在与他们的交流中,我知道了这些父母为了让我们无忧无虑地成长,需要承担很大的压力和辛劳。从此以后,我立志帮助这些小糖友以及他们的父母,通过我成长的经验帮助他们更好的成长,缓解他们父母的压力。

我们给我们的公益团队取名为“蓝精灵”(The Smurfs),这是因为蓝色象征着生命和健康,而我们希望我们能像蓝精灵一样,共同对抗糖尿病这个“格格巫”(Gargamel)。我相信通过我们的共同努力,我们自己能像蓝精灵一样,快乐和幸福的生活在蓝天之下。

Supporting Youth with Diabetes in Tanzania – George Kwayu

We actually first met George many years ago through a global diabetes program. Fast forward to January 2019, we’re hanging out at the Medtronic Bakken Honoree Invitation event in Hawaii! During this time, we got to share many more stories and the we heard the amazing work that George has accomplished and continues to do for youth with diabetes in Tanzania.

I was diagnosed with Type 1 Diabetes Mellitus (T1DM) in 1999 and have been on Insulin therapy since I was 4 years old. I take insulin four times daily, and regular blood glucose monitoring, along with a healthy diet and regular physical exercise. 

I was inspired to help other children and adolescents in 2010 after facing many challenges in my own life, such as stigma at school and other family problems. To live with T1DM in a developing country such as Tanzania is a major challenge. Communities are often not aware about diabetes and assume this is a condition which develops in older people as a result of the ageing process. I therefore, made it my aim to improve the life of others with T1DM by providing education to schools and the community at large. This was undertaken through visiting many T1DM clinics throughout Tanzania, making use of Mass Media such as Television, radio, newspaper articles, social networks such as WhatsApp Groups, Facebook and Instagram.

The drivers that led me to set up this project came through the stigma and isolation faced by all T1DM young people in Tanzania because of lack of knowledge in the community. In 2012 the Tanzania Diabetes Youth Alliance (TDYA) was established with the following objectives:

  • Spread information throughout Tanzania about children and adolescents with T1DM
  • Empower T1DM young people to live and have a voice in our government and society
  • Teach about T1DM to all schools throughout Tanzania and provide literature on T1DM for all heads of schools and teachers 
  • Provide counselling and peer to peer education centers
  • Establish T1DM leaders in every T1DM clinic to work alongside medical staff

Since 2012 when the Tanzanian Diabetes Youth Alliance (TDYA) was established, we now have TDYA branches at 34 T1DM clinics where we collaborate with health care providers around the country. Youth leaders, male and female, a Chairperson, a Secretary and Responsible parent have all been selected at each clinic. The function of those leaders and responsible parents will be to conduct peer to peer education, counselling, and raise funds for T1DM camps and activities.

I established the (TDYA) WhatsApp group in 2014, which is used to provide T1DM education and counselling. By connecting our youth with health care providers such as Doctors and Sisters in charge of the clinics and officials from the Tanzania Ministry of Health and the Medical Store Department (MSD), T1DM youth have a platform to present their challenges both medically and socially. TDYA WhatsApp group currently has more than 200 participants. Newly diagnosed children and their caretakers along with adolescents with T1DM, face major challenges. To be part of this WhatsApp group and to be in regular contact with others who have experience in T1DM is proving to be of great value. Facebook and Instagram pages are also provide another means to inspire and give encouragement.

Recently at Muhimbili National Hospital, the main referral hospital in Tanzania, permission has been given to establish a Counselling Center which is now in the process of being renovated. This will provide daily counselling for T1DM youth along with caretakers and parents with young T1DM children. T1DM graduates, medical staff and trained peer to peer personnel will be involved in this activity. If successful it can be run across the country.


In the next five years, I would like to see Tanzanian youth with T1DM have a strong voice in our community and be empowered by the Government in Health Care, for example, requesting that TDYA be represented at all stakeholder meetings concerned with diabetes. As a Leader of the youth living with T1DM, my dream is to see myself and all children and youth throughout the developing world, to be given respect and treated as any other young person and to be able to achieve their goals and dreams for their lives. Young people with T1DM should become confident members of society and contribute to the workforce. No child or youth should lose hope for their future and die because of diabetes.

To follow the work that George and TDYA are doing, check out these social media channels:

Tanzania Diabetes Youth Alliance Facebook: @tdya2012

Instagram: @George_Kwayu

Twitter: @GeorgeKwayu