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.