VESELIN BOYADZHIEV,
Pediatrician, Assoc. Prof. Dr., PhD, Bulgaria

Who are you and where do you live and work?

Hello to everybody involved in OI missions! My name is Dr. Veselin Boyadzhiev, and I am 50 years old. I am a pediatrician and pediatric endocrinologist, born in the beautiful city of Varna, Bulgaria. I graduated from the Medical University of Varna and have been working at the University Hospital “St. Marina” – Varna for 25 years.

Tell us about your work with OI!

My interests in pediatric bone health and calcium and phosphorus metabolism and its disorders, began around 2006 when I participated in an ESPE (European Society for Pediatric Endocrinology) winter school.

In 2008 I had the great chance to become an ESPE Fellow under Prof Nick Bishop at Sheffield Children’s Hospital, where I encountered OI patients for the first time. I will never forget the emotions and celebrations during the ‘OI Fun Day’ that was held in the city during my time there. When I came back in Bulgaria, we started to look for OI patients and during the next few years we already had 8-9 children with OI.

The first treatment courses with bisphosphonates in Bulgaria were performed in 2011. Most of our first patients are now adults, but fortunately we are still in touch with some of them. We currently care for about 15 children with OI, with the total number of our OI patients over the years being about 25.

Are you involved in OI or bone health research?

Yes, in 2015 our team became part of the AMGEN Denosumab study with 2 children successfully enrolled in the study. In 2024 I completed my PhD thesis on the impact of obesity on bone health in teenage girls.

Do you belong to any networks/scientific societies?

I am a member of the Bulgarian Association of Pediatricians, the Bulgarian National Pediatric Endocrine Society, the Varna Pediatric Endocrine Society, and the European Society of Pediatric Endocrinology.

How is treatment and care for children and adults with OI organized in Bulgaria?

The diagnosis of OI in our center is based on the usual anamnestic, clinical and radiological criteria. Most families already have genetic confirmation, but unfortunately the costs of genetic testing are not yet reimbursed by our healthcare delivery system. Neither is medications.

We have been administering bisphosphonate infusions since 2011. For some reason, most of our children are still on pamidronate. It seems that it is still psychologically difficult for families to switch to zoledronic acid. Many of our OI children have telescopic rodding surgery, which is available at several places in the country.

The transition from pediatric to adult care has been improving recently, as a part of addressing “transition problems” for chronic and rare diseases like diabetes, syndromic disorders etc. Most of adults with OI in Bulgaria are managed by endocrinologists.

Are you working with the national OI-organization in your country?

Unfortunately, our OI organization, established by a few families 2-3 years ago, is still not functioning properly. Meanwhile, the collaboration with other centers following OI patients, mainly in the capital Sofia, is also still insufficient and unsatisfactory – we still do not have a national registry and national plans for monitoring and treatment.

What is the most important role of OIFE compared to the national OI organizations?
In my opinion, OIFE is maybe the best institution for collaboration between the different national OI organizations and the place for exchange of knowledge and experience in the field of OI management. The membership in OIFE should be obligatory for every national OI organization searching for better OI healthcare.

What are the biggest knowledge gaps in OI?

I’m afraid that we really have a lot more to learn. Just take OI type 5 – a multifaceted disease with such a wide spectrum of possible phenotypic presentation, unusual complications and poorly understood mechanisms! But I hope that current and future technologies (such as genetics, molecular biology, medical physics, etc.), will help us fill the gaps very soon.

What do you do in your spare time?

I am a really big fan of sports – especially football and basketball. My other passions are music and playing the guitar. Traveling is also a must during vacations.

This article was first published in OIFE Magazine 2-2025.