Ioan-Gabriel Barsan is from Romania and has lived with type 1 diabetes for over 13 years. In 2006, when supplies and information surrounding diabetes care lacked in the region of Mures, a new diabetes association was founded called ‘ASCOTID’ – initialling the association of children and young people with diabetes. Ioan, a dedicated athlete whose dreams were crushed at the time by his diagnosis, has found a new passion in volunteering and advocating the work to improve diabetes care in Romania.
1. Can you tell us about the experiences of when you were diagnosed: how you & your family reacted, and how challenging it was to adapt?
IGB: “I knew something was wrong, that something bad was happening to me. I was feeling worse but at first assumed it was just a flu and didn’t want to go to the Doctor; I was scared. The ‘symptoms’ were there, but I had no idea they were the symptoms of diabetes… and I kept staying that way until I fell into the pre-coma, the day after Christmas.
It was very difficult at the beginning: I was very confused; I didn’t know what was going on with me or why I had to do so many injections. The whole family had a hard time accepting this, but you don’t have many options – there’s no other choice! It was harder back then in 2006… the medical system here in Romania did not offer you a lot, so I had to adapt as best as I could. Some of the biggest difficulties I encountered was in being an active child who loved and participated in all kind of sports – ever since I knew how to move – finding these opportunities suddenly restricted.”
I wanted a career in sports but I didn’t succeed. There is a stupid mentality, where it is hard to be accepted in sports if you have diabetes.”
2. As a ‘patient,’ how would you personally describe diabetes health care in your country – from access to education – what are the strong points / what are the negatives, and where would you like to see changes implemented in care?
IGB: “From this point of view I think it is ‘okay’ now, in that we get supplied enough insulin and a little more blood sugar tests, which was not happening in the past. We previously received 100 test strips over 3 months, which was not enough. Now it has improved in that we receive 200 blood glucose teststrips for 3 months, but of course we buy more from our own pockets if that is not enough.
There is a lot of work to be done here in education. Some doctors provide too little information to patients on how to take care of themselves; this is a very important aspect (for daily living with it) besides the others. With the help of ASCOTID we always try to create all kinds of workshops on this aspect in improving diabetes education.
The lack of insulin in the past years & blood glucometers, blood glucose testing strips; the unfair laws and those that violated patient’s rights and their needs have been slowly and slowly corrected and today we are facing a new era, that of modern technologies. Unfortunately still patients and parents who want this have to buy for a lot of money (and they are very expensive) and we are waiting for the application of the norms by which the Ministry of Health promised that they will receive for (pediatric) patients in Romania.
According to statistics, Romania is on the last place in Europe regarding hosting a health system, so the associations continue to provide services that are missing for patients. At national level, about 1.8 million people are diagnosed with diabetes as a whole (type 1, type 2 etc) and 823,000 benefit from treatment within the National Diabetes program, of which includes 3600 children, to a population of 19,640,000. The total number of insulin pump users is just 280. Of course I want to stop the corruption in Romania, get rid of it, and improve all these aspects for people’s basic healthcare rights.”
(Image: Ioan and young adult leaders of Ascotid attend the Diathlete advocates training camp at Gilwell Park, UK, in 2019, with Diathlete trustee Tracy Power in the centre)
3. What types of activities does Ascotid work on in helping people with diabetes?
IGB: “All the time we try to create all kinds of activities for the members of the association and for the general public: workshops, socialising, sports and educational activities for patients, childrens or their families. Here are some examples of ASCOTD MURES activities and events below:
- Diabetes education and prevention – information and medical education activities whcih share an insight into the misconceptions of diabetes, the differing types and treatments.
- Diabetes with children and teenagers – screenings for the detection of hyperglycemia and hypoglycemia
- World Diabetes Day – November 14 – discussions with diabetes doctors and guests, and educational activities
- Help for diabetic children – a campaign to raise awareness and to support children & their families with type 1 diabetes
- CGMS – supplying sensors for continuous blood glucose monitoring – a modern method for evaluating insulin therapy
- Controlling blood sugars – therapeutic education program
- The life of a child with diabetes – a public opinion information campaign
- Children’s day – music, dance, contests, fun and peer engagement in the community
- Organization of the National Conference “DIABFORUM” for patients, doctors, medical professionals, psychologists and nutritionists
- Organizing the ASCOTID TRAIL RACE running competition, a trail race and fundraiser for people with diabetes and the general public to participate
- Around the winter holidays, we organize a Christmas party, to offer packages to children in hospitals and children’s homes
- Information and education campaigns in schools, about adopting a healthier lifestyle
We must do this to help others, especially those who are at the beginning of the road or do not have many possibilities. It is important to help others, it is important to offer them a hope and to put a smile on their faces, to adopt this attitude in facing these difficulties of diabetes.”
4. What has been one of your most challenging experiences which you have faced in living with diabetes?
IGB: “I think we all have had many less ‘enjoyable’ experiences because of hypo or hyperglycemias! It is important to learn from them though, in order to try to avoid them being so frequent. Even though I was not accepted in sports, I still remained in this branch and continued to practice sports; more so for ASCOTID. I do not want to give up; I do not want to give up at what I love doing. For about 3 and a half years I was a football referee; I always had to hide in the bathroom or in the locker room, to measure my blood glucose or inject my insulin, which wasn’t too good. I had football matches in which hypoglycemia and hyperglycemia occurred, and I had to deal with it. It was hard because sometimes we had 2 games in a day, and they weren’t on the same stadium, so we had to travel with a car or bus or train. Imagine how much attention and concentration was needed from that! And when I didn’t measure my blood sugar and make my insulin it was terrible, I felt so awful.
After I got home it took me a few days to get back at a good, stable condition. It was hard because no one understood what diabetes meant, or they didn’t want to, and they were afraid. And after these years I gave up because I felt like I was degrading myself, physically and mentally. It was a pleasant experience but also very negative. And sometimes in day by day life, the world looks at you with different eyes, and others have all kinds of opinions, but now I don’t care anymore. I learned to control that. But back then, I felt like a monster. But it’s passed away in time.”
5. Can you share with us about a unique experience or achievement that you have had through living with diabetes?
IGB “Of course there have been pleasant experiences over the years too! A main one for me was when I became a volunteer at ASCOTID, and remaining one through the years! I have participated in a lot of beautiful experiences and have met some great people, and I learned a lot from being in the LOD network too, this global team of all amazing people! I continued with sport; I met beautiful people, I saw new places. In 2015 I was selected in the national team ‘Dia Romania’ where I participated at the European Football Championship, that our Romania team managed to win successfully! I keep on running with the Ascotid Trail Race, at marathons and more recently at ultramarathons competitions! And I hope and am sure that more beautiful and unique moments will come!
6. From all your experiences so far in living with this condition, what would be a key message you would like to share with others living with type 1 diabetes out there?
IGB: “Diabetes can be difficult sometimes, but never impossible. And that MAKE US AMAZING HUMANS! JUST FIGHT FOR YOUR DREAMS, AND NEVER, EVER GIVE UP ON THEM. NOTHING IS IMPOSSIBLE!
YOU`RE MUCH STRONGER THAN YOU CAN EVER THINK! SO… RISE AND SHINE!!!”