Pain is reported to be the main challenge for people with OI besides fractures. More than 60 percent of people with OI have chronic pain, and the percentage and complexity increases with age. 83% of adults with OI have chronic pain.

In spite of this, there is very little information about how you can manage pain as a child or adult with OI. There is also little knowledge and awareness about different kinds of pain people with OI have, both among people with OI themselves and professionals.

An international resource group

On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the OIF (USA). It includes a group of dedicated professionals who have experience in pain management, pain research and/or pain & OI. Originally it was thought to be more of a fixed expert group, but people change jobs, projects and priorities. So we have renamed it to an international resource group on pain & OI. We have also included some experts on other rare bone conditions than OI.

At the moment, the resource group includes ca 30 people from 12 different countries, covering both pediatric and adult professionals. It’s a multidisciplinary group which include PTs, orthopedic surgeons, endocrinologists, rheumatologists, anaesthesiologists, pain specialists, psychologists, pediatricians, researchers, nurses and a social worker. The group also includes professionals who have OI themselves. In addition we have representatives from OIFE and the OIF, who contribute with administrative support and input from the perspectives of adults with OI and parents of children with OI

We have agreed on the following common goals:

  1. Recommendations on how to assess pain in OI incl. different kinds of pain
  2. Recommendations on how to measure pain in OI in the clinic and in clinical trials
  3. Educational activities about OI & pain to various target groups
  4. A toolbox on management of chronic pain for children and adults with OI

We have had six constructive workshops in 2022 and 2023. Questions that have been discussed include: 

  • How does pain in OI differ from pain in other conditions?
  • What is the connection between OI pain & hypermobility, sleep, fatigue, soft tissue, inflammation, obesity and arthritis?
  • How can we prevent chronic pain by providing better acute pain management?
  • Do pain diaries make sense? Are people motivated to use them?
  • Will ICD-11 provide a better classification system for chronic pain?
  • What is the connection between pain and physical function?
  • What coping strategies are most beneficial when it comes to pain & OI? Do people with OI ignore (cope with) their pain for too long?
  • Are there any factors that help buffer mental health problems because of pain? Ex: peer support, parental support, coping, resilience etc.?

The pain and OI survey

In 2023 the OI Foundation and the OIFE partnered on a new project investigating the experience of pain for people with OI. The Pain and OI survey investigates the experience of pain for people with OI. The survey was for anyone 18 years old or older and was written with input from OI experts from North America and Europe. It was in English language only.

Through this survey, we want to learn more about the different types of pain people experience, severity of pain and frequency, and how it impacts people’s lives. Researchers from Baylor’s College of Medicine is now writing an article with findings from the survey.

In the meantime the OIF has made a summary which was published in the Breakthrough magazine. See below.

The Stockholm conference

Under the title “Balancing life with OI” we organized a topical meeting on the neglected subject of the causes, assessment and management of pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. The event took place at the Scandic Continental Hotel in Stockholm, Sweden, on 9-10 June 2023. More than 200 people took part both on site and online. See more information here.

Group photo from above of all participants
Group photo from above of all participants

Toolbox on Pain and OI

We are currently working creating a toolbox on pain and OI. The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU like to see included in such a toolbox? Please let us know what features and information you would like to see in a toolbox on pain management.  You can do this by sending an email to

Other pain related projects we are involved in

Qualitative Research on Patient Experiences of Pain in Osteogenesis Imperfecta. An interview-based study.
The aim of project is to support a pharmaceutical company in understanding the signs, symptoms, and impacts of osteogenesis imperfecta (OI), with a focus on pain, fatigue, and physical functioning in adults (≥18 years old), adolescents (12 to 17 years old), and children (eight to 11 years old) living with OI, with the goal of creating a better clinical trial. OIFE and OIF has been part of the steering committee and organizations in UK, USA, Australia and Spain have been asked to support the project. The project is not yet recruiting.

Videotalk about the pain project

In the video below you can see a talk which explains the background for the projects, which was given by Ingunn Westerheim at the OIF Townhall meeting in autumn 2022.

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