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T1D in Bulgaria & in Motherhood

With Rossitza Handjiyska.

Rossi is from Sofia in Bulgaria and was diagnosed with Type 1 diabetes in May 1995. In this Diaview, we hear an insight into diabetes healthcare in Bulgaria, the incredible efforts she makes with her support group Живей активно с диабет which translates to “Active Living with Diabetes” – and the journey she has had in recent times, since becoming a mother for the first time to her beautiful daughter, Stella.

Hey Rossi, going back to begin with your earlier experiences after you were diagnosed with diabetes, what do you recall feeling emotionally?

Rossi: “to be honest, as I was six years old, I do not remember too much of the early months and years after the diagnosis but I think the burden back then was more for my parents and sister. I remember that we were going to lab works every now and then, and everybody there commented how courageous and smiley this little girl was. When I look back, I think children can feel everything around them. I was just trying to comfort my parents that way and be as brave as I can be for them. Diabetes certainly impacted all my family and changed our lifestyle. Back then (in the 90s) it was much harder without all of the diabetes tech, so they did an excellent job.”

What would you say helped the most to accept and start to work with your diabetes?

"I think the hardest period for me was in my early 20s - it was time for me to move out from my

family's house, to start taking care of my diabetes for myself (before that in my head it was like my mom's issue - her responsibility). It was the moment I finally realised I haven't truly accepted my condition and needed help to do that. The transition wasn’t easy at all – it was a whole process. What helped me most back then was the support from my best friends, my family, my endocrinologist. I even started sessions with a psychologist, and thanks to that I finally found the great support one can find in the diabetes community.”

In your view, how is the ‘diabetes’ side of healthcare in your country? What do you get support on? What lacks support or could improve?

“Our health system in general needs a lot of improvements. There are not enough healthcare professionals (nurses and doctors), there is a big gap between public health clinics and private ones in terms of quality of care and conditions. One thing that I appreciate is that if someone is enrolled in the national health fund, he gets his insulin for free. A few years ago, insulin pumps were included as well in the program. Last year, CGMs also (procedure to receive them is pretty strict still). Things that need improvement are:

  • The path for a patient to receive monthly supplies is very complicated (you get a protocol for 6 months or 12, then you go to validate it, then every month or 3 months you go your general practitioner for prescriptions, and there is no way you can receive your supplies for a couple of months if you are traveling abroad for example.)

  • Same goes for the needed prophylactic consults and lab works – a lot of people are not able to prevent complications or have the access to support for their management as they should.

  • There is a huge difference between quality and access to medical care between the capital and in the country.

  • Psychological support is very hard to find and not included in the diabetes management.”

How accessible are advancing diabetes technologies for you? Does the health system support with any provisions in this area?

“One of the big issues is that only few health professionals are educated to work with new technologies, so diabetes patients have only 3-4 clinics in the entire country to go to for this kind of information. For example, I have an insulin pump and my endocrinologist cannot help me with that at all; I need to go to one of the specialised clinics, which is not easy because there isn't an official way to do so, besides being hospitalised. We are lucky that doctors there are with big hearts and do their consults between things for free, but this isn't right.

We have insulin pumps and sensors covered by the National health fund after approval of special commission and under strict rules. One issue is that insulin pumps are older models, sensors are brands that are not familiar or a cut models, and a lot of people (if they have the financial possibility) order them abroad on their own from the biggest brands. This increases the costs with also the expense to go and collect or have transported.”

How does ‘Active Living with Diabetes’ that you’ve helped set up over there, support people with diabetes? Can you share an insight into the types of projects you make?

“Our current focus is on two projects – the psychological side of life with type 1 diabetes and

attracting more young people in our community. Because of recent covid restrictions, we started this with a series of webinar sessions focused on psychological issues for people living with diabetes and last year we were able to continue with events face to face (subjects covered for example were diabetes burnout, diabetes distress, depression, diabetes and its impact on the family etc.)

We are now trying to enlarge our community and support the people by giving them education in how to take better care of themselves and create a safe space to share their emotions and daily struggles, the highs and lows of living with type 1 diabetes.”

Along with the fantastic work of Active Living with Diabetes, on a personal side, in the last few years, you’ve also become a mother for the first time! Can you share some key tips from your experiences of managing diabetes through pregnancy?

“When I look back to my pregnancy of course I see things I would do differently now, but what I find most important as advices are these: first find a team you trust (OB, endocrinologist, dietitian, psychologist etc). Second be ready for changes to your diabetes management all the time - you will need to adapt your doses a lot during the different stages of pregnancy and my last advice - try to keep calm - that’s the toughest, but most important I think - keep your

eyes on the prize, breathe and follow the advices of your doctors - even if there are some hard days, you got this and it’s worth it!”

As a person with T1D I think the biggest change was in the priorities in my daily life - I started to forget things about my diabetes that I wouldn’t before but suddenly everything started to revolve around the baby and she became my first priority. I mean things like not bolusing on time for lunch, or bolusing but not eating right away, or going on vacation and taking my diabetes stuff last. I think it is important to remind yourself during that new phase to take care of you and to not forget your diabetes because it is hard the first months. Everything is new, you need time to adapt, your focus is on the baby but your diabetes is still there and needs your attention as well.”

How was that process of adapting to those changes?

“I think I am still adapting to it every now and then because you enter new stages every couple of months with a baby, then a toddler… and I am just trying to adapt my insulin doses and diet to the life routine we have and to be flexible. For example, in the summer we had longer walks in the park so that was less basal and more snacks for me. Now we are not that much on the move, so I need more insulin. The most difficult part for me is this new fear of going into a serious hypo while being alone with my daughter. So, in some situations (like when I need to drive her somewhere or we have a big schedule to follow) I keep my blood sugars a little bit elevated but then I feel guilty that it should be in a better range and as you can imagine, it is a tough balance to keep and it can become mentally overwhelming some days.

I also started also to lock the keypad of my insulin pump recently because she knows not to touch my pump but still tries to sometimes - I am curious how the talk about mom having diabetes will go someday. I don’t hide anything from her - she knows that mommy has a sensor and a pump but she is still little to understand everything about it.”

In a relationship, how do you best communicate with your partner for support in both the parenting side with understanding of the diabetes side too?

“I think communication is really key. My advice is just don’t assume things - tell directly how you feel, what you need, when you need help. Tell your partner when you are low or high or just tired. Parenthood is a whole new phase for both of you - why wasting time and energy on guessing the other person’s wishes and needs? And be patient and kind on yourself; diabetes is a 24/7 additional job - you don’t have to be superhero or perfect, just be good enough. Try to let go of the guilt you may have when asking for help when not feeling ok because of a low or a high.”

What tips could you give to other mothers with diabetes, or those thinking about becoming a mother, from your experience after pregnancy?

"You got this - just find your support system and use it (doctors, your partner, friends, other type 1s). Take all the help there is - don’t deny it, you got nothing to prove. It takes a village to raise a kid, right? Take care of you too - if you are ok and in a good shape, everyone around you will be too! Don’t forget to do things also just for fun - I think that would be my new year resolution because with diabetes management and parenthood sometimes you follow the schedule, do things you have to and forget to do something from time to time just because you have fun doing it.”

Diaview’s are interviews sharing personal experiences and holistic projects connected to type 1 diabetes. Content may be associated to an individual’s opinion or response to their personalised diabetes care; for any medical decisions, always feel welcome to ask questions but please consult your healthcare team for clarification or final decisions you may look to make regarding your personal management.

Diaview shared January 2023.



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