Impressions from “Balancing Life with OI”

OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants:

Alessandra TolacciaAlessandra Tolaccio

My name is Alessandra and I am 48 years old. I have OI type 1. In my early 30s I started experi-encing pain which over time became chronic and it stated effecting many aspects of my life.

From my point of view the conference was perfectly organized and everything run smoothly with many extremely interesting presentations and a rich program. There was also time to meet with fellow patients and the lecturers which was a plus.

My personal highlight: The fact that for the first time, to my knowledge, there has been so much focus on the pain issue on adults with OI. It has been extremely interesting to see how all the studies that have been presented showed that people with OI type 1 are the ones within the OI community that are experiencing more chronic pain. This “new” interest in pain and pain related issues is something that gives me hope for future.

Dr. Cecilia Jimenez-Moreno

Cecilia JimenezI attended the virtual version in represen-tation of the team, and I really enjoyed it. It was very much science driven and the quality of the talks was high. You made me want to go back to my academic life! I took lots of notes, both from the talks but also from questions raised by the audience (as these are for me as informative as the response) and I will be sharing them with the team on our next call.

You also did an amazing job intercalating patients’ voices and testimonies; then, the emotional wave was not all at once and you kept reminding the audience the why of all that research. So, in summary, hands up to you and OIFE and thank you so much for chasing up my registration so I couldn’t miss it.

Eva Sacherer

My name is Eva Sacherer from Austria. I am the OIFE delegate for the Austrian OIEva Sacherer organization, called OIA. I am mother to my beloved son Jakob who just turned two years old in May.

The amount of information in Stockholm was overwhelming to me. On the one hand it was kind of practical to get very short snaps of inside views on different topics. If this or that topic was the one you were interested in, you could talk to the presenters afterwards during coffee breaks. You could tell that there was a lot going on in this field around the world.

I had been waiting all weekend for an explanation as to why Jacob gets spasms when his femur breaks. He suffers a lot from it, and I was looking for a way to take this acute pain away from him as quickly as possible. I was surprised that nobody mentioned it.

As luck would have it, a paediatric surgeon sat down next to me during the gala dinner. After some small talk about the fishy food here in Stockholm, the sound of music (foreigners always mention this to Austrian citizens) and the medical care given to the children in the USA, I asked about the spasms and received both this and Jakob’s overall Habitus answers. Arnica, Arnica, Arnica tinctures and immobilize the leg as much as possible, sometimes cool, sometimes warm, everyone is different, but provide effective pain medication as quickly as possible.

Stockholm impressed and moved me deeply. Pain and fear accompany both children and parents throughout their lives. If we still manage to make Jakob have a little less pain the next time he breaks, then it was worth the trip. Thanks, OIFE for this brilliant conference!


Dr. Frederik Heinrich

frederik heinrichI am Frederik Heinrich, 43 years old, living in Berlin, Germany. I am a scientist working as a bioinformatician at the German Arthritis Research Center Berlin (DRFZ), that focuses on understanding the immune system in health and disease. One of the main emphasis lies on autoimmunity such as rheumatic diseases. I have OI myself, and my parents were cofounders of the German OI foundation almost 40 years ago.

I really enjoyed the Stockholm conference. I highly rejoice international gatherings, because it simply widens one’s horizon. Hanging out with other OI people to share common experiences is always a bit of a vacation from everyday life, but doing that in an international context, is even greater.

Talks, and people presenting at the conference were very interesting, the conference schedule was pretty tight, but very well organized. Maybe a bit more breaks in between, or less presentations all together would be good. At a certain point I always kind of get saturated with information I can conceive. The place was really great, and I liked the bit of Stockholm, which I explored, a lot. My highlight was definitely meeting OI people from around the globe, and getting together, and simply having a good time.

Marie Coussens

marie coussensI am a physiotherapist and in the final stages of my PhD at Ghent University (Belgium). I have a particular interest in adults with hereditary connective tissue disorders such as OI. My research focuses on the identification of bone and muscle issues (e.g., muscle weakness, altered body composition, lower resistance of bones to external loads, the reactivity of the bone to muscle strains) in these individuals.

Based on these findings, we aim to set up a safe training which may improve both some of these bone and muscle issues in individuals with OI.

It was the first time I joined an OIFE conference, and it was really enriching for me. The Stockholm conference gave the opportunity to gain insight in the perspectives of not only researchers involved in OI research, but also from the OI community and clinicians working with individuals with OI.

Also, it highlighted the importance of pain in individuals with OI and the high need for further research and appropriate treatments. As a researcher, these perspectives provided me with further insight in the current research priorities and may as such further guide the direction of our research.

My personal highlight: The solidarity among people with or working with OI.

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