I have diabetes; diabetes does not have me! – by Ian Tonge

In this global postcard, we hear from Ian who was diagnosed with diabetes when he was only two years old. Times has changed since then, and with that, diabetes management and technologies. Ian reflects on these changes and the big changes in his life that has brought him here.

My name is Ian. I am 63 years old and have type 1 diabetes, diagnosed in times very different to the one we live in today. The rigidity expected from diabetes management was unrelenting and made it easy for me to push the boundaries as a very young child. These times were also when so much was missing from any form of effective management. It often caused people with diabetes diagnosed to have a future full of the promise of more misery. Even I was at a loss to understand how I managed to avoid such a future. 

One thing was for certain; I had always been determined to go out there and not allow anything to stop me from achieving my targets. Whilst I have always respected my diabetes, I wasn’t going to let it get in the way of my ambitions. 

Following on from my last retinopathy examination, I was delighted to be informed that I had the ‘eye-profile of someone without diabetes’! The consultant involved in this examination was amazed; apparently, he had never come across such a long-standing diabetic with zero complications and issues normally associated with such!

It was at this point that I decided I needed to tell my story to the rest of the diabetes world and beyond. This was drawn from a simple additional detail that made my story ever more amazing; please allow a short explanation here:

In 1985 I was involved in an accident I was never expected to have survived, diabetic or not. How many people have you heard who survived being out of their own car and being hit head-on by a car travelling at over 80 mph? It is less than a 1 in 10 chance you will survive when hit by a car doing 40 mph (~65km/h). Imagine that. 

Besides this, I have lived a fun-filled, exciting, enjoyable and successful life to this point. All I want to do now is to show others just how simple it has been for me to have such a wonderful life. Even when most has been spent attached to my type 1 diabetes. I believe that by sharing my memoirs, I will be able to show others just what can be done!

Living with MODY3 – Part 2 by Nadia Milojevic

In this two part global postcard, Nadia shares her MODY3 diagnosis with us. In Part 1, she talks about her initial diagnosis and the challenges she faced trying to find the right management for her. Part 2 sees Nadia moving to Italy and having to self-advocate for her own medical needs. Want to find out more about MODY 3? Check out this link here.

Part 2 – Diagnosed Again! 

It was all going well until 5 years ago, when I experienced a rather traumatic period in my life. I ended up moving to Italy with the hope of regaining courage and strength to start a new life for myself. Along the way, my health and my diabetes was affected from all the stress I endured. I became very underweight, fatigued, wasn’t sleeping again, and just couldn’t manage to control my sugar levels no matter how hard I tried. I never lost hope. I loved being in Italy. I had finally found my happy place again, and wasn’t going to let this situation send me home, so I started searching for a good doctor that could help me here.

Eventually I managed to get an appointment with a specialist and had my first visit to the diabetes clinic here in Italy, which was certainly one to remember. I couldn’t speak the language very well at the time, so as you can imagine it was quite an event. 

The clinic was really well organised but when I told my doctor that I had MODY 3 and just needed to increase my tablet dose, they refused to do so. Since I never actually had the genetic test, the doctor insisted that I will be placed back on insulin again. That’s when the nightmare really began..

At this point, I was on both my current tablet and insulin, which was way too much for my body. It was a total mess. I was having hypos daily, and was feeling continuously fatigued. It was horrible, but I never gave up, and just wouldn’t stand for it.

So, after 2 months of letting the doctor try and sort out my treatment with no success, I insisted on having an official genetic test. I needed to confirm my type of diabetes once and for all, so I could receive the proper treatment. It took a while, but in the end, I was accepted to have the genetic testing done at a hospital in Rome. I was then officially diagnosed with MODY3 after eight years of living with diabetes. It was one of the most emotional moments of my life and one that I will surely never forget.  

From that moment on everything changed for me and I was finally on the road to recovery and was receiving the correct treatment again. Life isn’t perfect now living with MODY3. I still have my ups and downs. But we all have our own difficulties and challenges to face and MODY3 is mine. As funny as it may sound, my struggle with diabetes has actually made me a stronger and more ambitious woman today.

In my opinion the true silver lining to having diabetes is having to really take care of your body in order to stay alive. This is something that a lot of normal people really take for granted. There are so many ways in which we can help ourselves to live healthy and happy lives. And like I always say: it all starts with you.  

Living with MODY3 – Part 1 by Nadia Milojevic

Over the last few years, we are hearing more about various types of diabetes apart from the usual type 1, type 2 and gestational diabetes. In our two part global postcard, Nadia shares her MODY 3 diagnosis story. What is MODY 3? Check this link out to find out more. For part 2 of the story, click here.

Part 1 – Diagnosis

Diabetes has always been a part of my life. Growing up, both my father and my uncle had the condition. Not to mention that my grandfather and his 7 brothers were all “blessed” with diabetes. So, I guess I always knew from a young age that eventually I would become a diabetic. 

Sure enough at the age of 16 I was diagnosed with type one diabetes just like my dad. My initial symptoms were not typical though. I wasn’t tired, nor did I experience weight loss or extreme thirst. I did get a rather strange numbness in my feet, which prompted me to get my glucose levels checked. Especially as diabetes was very strong in my family history. This was where it all began.

My first experience of injecting myself with insulin came so naturally to me. Not only did I have to inject myself daily, I was only 16 and had to completely change my life around. I can still remember how amazed the nurses were at just how calm and composed I was. 

In comparison to others with diabetes, I had the advantage of being very well prepared and knowledgeable about the condition from my upbringing. I knew what I had to do, and was determined to take on all of what I had learnt from watching my dad. My objective was to be the most healthy diabetic possible. I saw it as a challenge more than a disadvantage or a means to feel depressed about it. Unless I accepted it and did what I could to be strong, I wasn’t going to be helping my body.

After about two months of using insulin, I started having problems managing my glucose levels. It seemed like the insulin just wasn’t working for me. I started having many problems sleeping, eating, and I was always afraid to exercise as it would lower my glucose levels. My glucose levels were all over the place and nothing seemed to be working.

So after weeks of struggle my amazing doctor suggested that maybe I wasn’t in fact a type one diabetic like my dad, but actually a MODY3 (maturity onset diabetes of the young) diabetic like my uncle. As genetic testing was really expensive at the time, my doctor and I decided to go with her gut instinct instead. Under the guidance of my doctor and other diabetes specialists, I was hospitalised for a week to transition from insulin to my current tablet, gliclazide, which was what my uncle was taking at the time. 

Within the first few days of the transition, my levels began to stabilize both during the day and throughout the night. Finally, I was able to start sleeping a little better and eat more normal quantities of food as I was no longer experiencing those horrible hypos. My doctor’s intuition was right, and it was from that moment that I was then officially diagnosed with MODY 3 even without the genetic test.

Diabetes: Recognising the LGBTQIA+ experience – by Edwin Pascoe

Edwin is a registered nurse and credentialed diabetes educator who is focusing on diabetes care in LGBTQIA+ communities. In this Global Postcards, he shares where the passion for this topic came about and why research into this area is so important.

I don’t have diabetes but describe myself as a person running away from type 2 diabetes. There was the constant struggle to lost weight, for my health and to fit in with the community as a gay man. Not only was I rejected by the wider community in the 80s and 90s for being gay, but that my worth as a person was calculated by the way I looked; creating a sense of loneliness. 

In 2014 I decided to start a PhD looking at the experiences of gay men and type 2 diabetes management. We know that up to 50% of the impact on diabetes care is related to what occurs in the psychosocial space. Yet, there has only been one study that has looked at this very question. Type 1 and 2 are very different, and so too are the experiences of each group within the LGBTQIA+ community. 

Traditionally, our community has had a focus on sexually transmitted diseases and mental health rather than chronic conditions. Evidence suggests that members of the LGBTQIA+ community disengage from healthcare due to discomfort around what was said, poor knowledge and outright homophobia. This has also been reflected in my research where gay men were found to use multidisciplinary teams up to 50% less, resulting in higher diabetes-related complication rates.

This year, I participated in the 2020 Pride March to help share my research findings and also to make diabetes visible to the LGBTQIA+ community. The crowd response was mixed: there were the cheers, smirks, surprised looks, and people showing us their diabetes devices. I believe that it is important there is continued research to refine knowledge in this space and to raise awareness around diabetes within the LGBTQIA+ community.

Minisode: Making a Business from Diabetes Advocacy

We’re starting off the year with Anna Sjoberg, who joins us from snowy Sweden. She is the founder of AnnaPS, an eco-friendly fashion line for men and women with diabetes. Anna is also an avid winter athlete and Ashley chats to her about sports and diabetes – even though it’s summer in Australia!

Changing Diabetes through New Advocacy – by AcT1ve Diabetes

The members of ACT1VE Diabetes share how they completed a challenging task in 2019 to define and present ways life with diabetes can be improved in the Philippines! Read their story in English and Tagalog:

Read in English: 

It all started with a message from Dr. Francis Pasaporte, Director of the Rainbow Camp, inviting young adults living with diabetes in different areas of Luzon, Philippines, to participate in a special activity in Makati City.

On May 24, 2019, all ten participants met one another at Makati Diamond Residences, starting random conversations and catching up with each other. Why all the catching up? Since all the invited participants had already created bonds of friendship during our annual diabetes summer camp, Rainbow Camp Foundation. While we were talking, the questions about our activity kept circulating: What are we going to do here? What will be the topics to be discussed? Who will discuss them? 

We soon found out when Ms. Renza Scibilia from Australia and Mr. Chris Aldred from United Kingdom were introduced. Both grew up with type 1 diabetes and came to Manila, sponsored by Novo Nordisk, to inspire us and to help us advocate for the diabetes population in our country. 

We overcame some difficulties with communicating in English, since most of the participants were more comfortable communicating in Tagalog, and Ms. Renza and Mr. Chris started the discussion with their examples of the best way to start any conversation: by sharing your own story.

They also taught us different techniques and strategies on how to draft a proposal letter or a speech, and we appreciated the mentoring that was happening. During a break from the discussion, we learned that our goal was to prepare a short presentation to give to a representative from PhilHealth, a government insurance agency, on the second day of our conference to show how they could help the type 1 diabetes community in the Philippines. 

We started discussing the different issues and needs of people with type 1 diabetes in the Philippines and narrowed them down. We were divided into two teams and each team got to choose which major aspects they wanted to explore within the issue of accessibility.

Allow us to paint a picture for you: A person with diabetes in the Philippines needs a lot of money to survive. Why is that our reality? Because we spend money on insulin, test strips, quarterly laboratory tests, and quarterly check-ups from the doctor, in addition to basic necessities (food, water, shelter). Due to these costs, quarterly laboratory tests instead become yearly. Quarterly check-ups with the doctor become too expensive, so some opt to go just once or only every other year. Insulin and test strips are also rationed, resulting in the use of cheaper brands of insulin and checking blood sugar to only once every other day. 

Ms. Arcelli Lanorio, a representative from the Philippine Alliance of Patients Organization (PAPO), presented on “Changing Diabetes with the New Advocate Leaders.” She demonstrated that we can value our lives despite living with a chronic condition,- and made us feel that we are not alone in this fight and that we can do anything together. We were also introduced to Ms. Marian Pausanos, a Media Communications expert who gave us a basic idea of how to create an effective and eye-catching campaign to strengthen the message that we were to convey in our presentation the next day. We ended the first day of the workshop with new knowledge, bursting with a lot of ideas on how to help people with diabetes, especially those in dire need.

Who could’ve imagined that through simple sharing of personal experiences, we could come up with concrete, realistic, and practical proposals that could help ease the burden of living with type 1?

On the second day of the workshop, everyone was anxious but ready to go! The first group presented the need to lower the price of insulin and offer patients at least a 20% discount from MSRP. The second group presented the need to offer a monthly supply of blood glucose strips per person with diabetes, in accordance with a rough computation of the monthly expenses of a person with diabetes. Dr. Israel Paragas, Senior VP of the Philippine Health Insurance Corporation, listened to our proposals and gave us valuable feedback on how we can further improve our presentations in the future. 

We all went home to our cities filled with ideas of how we can help people with diabetes just like us. With the help of the people who support us on our journeys with type 1 diabetes, we will never lose hope as we continue our advocacy to help people with diabetes to live life to the fullest with diabetes – ourselves included!

Read in Tagalog:

Isang paanyaya ang aming natanggap mula kay Dr. Francis Pasaporte (Rainbow Camp Director). Nagsimula ang lahat sa simpleng kamustahan, chikahan hanggang sa mapunta na sa kulitan. Dahil kaming lahat ay galing sa iisang organisasyon at ito ay ang Rainbow Camp Foundation Philippines, halos namiss namin ang isa’t isa at iba’t ibang kwento ang aming napag uusapan. Sa mga oras na ito, blanko pa rin ang isip namin kung anong gagawin? anong mangyayari? at ano ang mga topic na pwede naming matutunan? 

Hanggang dumating si Ms. Renza Scibilla na galing mula sa bansa ng Australlia at si Mr. Chris Aldred na mula naman sa bansa ng United Kingdom at tulad namin sila rin ay mayroon din Type 1 Diabetes. Lumuwas sila sa Manila upang magbigay ng tulong at ambag na ideya sa amin dito sa Pilipinas. Nagpakilala sila sa amin isa-isa at syempre medyo madugo ang mga nangyari dahil English speaking pala ang usapan naming lahat. 

Sinimulan nila Ms. Renza at Mr. Chris sa simpleng usapan para makilala nila kami ng mas mabuti at ito ay sa paraang i-bahagi namin ang aming sariling istorya. Tinuruan din nila kami ng iba’t ibang pamamaraan at istratehiya upang magkaroon pa ng mas malawak na ideya kung paano gumawa ng isang Proposal. 

Sinimulan naming talakayin ang iba’t ibang problema at pangangailangan ng mga taong may Type 1 Diabetes sa Pilipinas. Napag-usapan naming na hindi lang pala insulin at strips ang higit na kailangan ng taong may Type 1 Diabetes, nandyan yung meron pang Laboratory test kada ika-3 buwan, konsultasyon, hospital admission, populasyon ng Type 1 sa pilipinas at marami pa. 

Nakilala namin si Ms. Arcelli Lanorio, kinatawan mula sa Philippine Alliance of Patients Organization (PAPO). Binigyan niya kami ng maraming ideya upang mas maintindihan ang halaga ng buhay, yung pakiramdam na hindi kami nag-iisa at kakayanin namin ito kung magsasama kaming pagtutulungan ito. Pinakilala rin sa amin si Ms. Marian Pausanos, isang eksperto sa larangan ng Media Communication. Itinuro naman niya sa amin ang mga pangunahing paraan kung paano gumawa ng isang mahusay at epektibong mensahe na makakatulong sa paglalahad naming nang para sa policy maker ng Philhealth. 

Natapos ang unang araw namin na punong puno ng bagong kaalaman pero napapa-isip kung ano pa ba ang mga paraang magagawa naming upang makatulong sa mga katulad naming nangangailangan din ng tulong. 

Sa ikalawang araw sinimulan na nga naming ang mga presentation na pinangunahan ng unang grupo kung saan pinapakita nila na mas kailangan namin ang tulong sa INSULIN. Ang pangalawang grupo naman ay pinakita ang pangangailangan sa BLOOD GLUCOSE STRIPS. Sa huli ay binigyang kami ng ideya at konting komento ni Senior VP, Dr. Israel Paragas ng Philippine Health Insurance Corporation, upang maarng maibigay niya sa kinauukulan.

Umuwi kami na punong-puno ng kaalaman upang makatulong sa kapwa namin. At Sa tulong ng mga taong sumusuporta sa aming mga may Type 1 Diabetes hinding hindi kami mawawalan ng pag-asa upang patuloy na tumulong sa kanila sa magandang pamamaraan.

Composed, edited and translated by:
Kenneth Paul Ira
Jamie Rose Cinco
Francesca Isabel Villanueva