Report from Quality of Life 4 OI

OI is more than Fractures, Surgeries and Pain!

As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019.

This conference was expected to gather the scientific, research, medical and many proactive individuals with OI themselves or others representing ‘the patient’ side, which in my view it certainly was successful at. The topics covered at the conference were diverse and encompassing the latest research from clinical trials involving young OIers, such as Stem-cell Injections as a treatment option, to the most efficient medical care structures for patients with OI at a global stage coming from Canada and Hong Kong.

There will be many reports coming from different attendees at the conference from our German side. Therefore, I would like to narrow my reporting to the themes of the conference that stood out to me personally. I would not be mistaken to say that it was probably the first time ever that a conference of this scale managed to shed light on one of the most untapped subjects of all, the psychosocial aspects of OI. As we all know, OI comes in all shapes and sizes, its diversity has posed tremendous challenges to medical teams all over the world for years. Increasingly though, as doctors and surgeons thought they got a grip on how to diagnose, how to manage fractures, how to straighten bones and maybe even how to manage pain. Once again, they found themselves challenged and faced with issues that could interfere with the results, they would expect from the medical and therapeutic treatments provided to their patients.

The psychosocial consequences of OI are indeed diverse and very common. These psychological barriers are also very independent of the type of OI and the age of the person with OI. They range from the sense of isolation as fractures and hospital-stays reoccur more often than wanted to depression, self-esteem and confidence issues and not to forget the extreme lingering fatigue that interferes with the daily activities and performance of children and adults alike.

There was one workshop titled ‘Psychosocial Aspects of OI’ led by wonderful speakers: Kara Ayers (USA), Claire Hill (UK) and Ute Wallentin (Germany). The workshop allowed for discussions to take place around the topics of Fatigue, mental health and pain management. Different Coping tools and mechanisms were also suggested. In addition, there was a wonderful exchange of knowledge and ideas between the speakers and the audience which allowed for the OIers to voice of what mattered to them and had a say as to what was important and what was not. Though it seemed that we are still right at the beginning, we definitely should not let that discourage the efforts and the meaningful work that has been done so far to tackle these issues individually. All with this in mind, it becomes evident that it is an urgent matter to include a well-structured psychological support as a vital and essential part of any OI- treatment starting, preferably, in early childhood. Subsequently, there is an urgent need to improve early screening methods and treatment options to overcome the psychosocial problems for sure.

To sum it all up, I was extremely impressed and glad to see the active involvement of empowered young and adult OIers who are taking the reins of their care and lives to personally direct OI-specific research with the aim to better the quality of their community in the context of the individuals’ varied perceptions. With that I would call on the conference organizers for a follow-up in few years to see what has become of all the studies presented.

Written by Meriem Ben Jelloun, DOIG 

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