OIFE’s Stronger Together-project is ongoing and will have an important milestone at our capacity building conference in Valencia in September. The conference is for board members, staff and volunteers from our national OI-organizations. The goal is to make our member organizations better equipped to meet the complex reality that we’re living in – and give them some tools to realize our vision, which is:

“Children and adults with OI living active and independent lives – with access to competent healthcare and necessary social support.”

So originally my plan was to write an editorial about this project. How can we become stronger organizations, stronger voices and have a stronger impact by working better and more efficiently together? How can we use our limited energy and resources to improve lives of people with OI in all age groups? And their families?

How can we be better at creating OI-organizations that are inclusive for everyone – healthy parents of OI-children, teenagers, siblings, parents who have OI themselves and adults with OI. With all types of OI? With all kinds of backgrounds or preferences.

Because while new OI-parents might be worn out and desperately searching for the cure, the adults with OI might have other needs and perspectives. They might be more interested in just getting on with their lives while struggling with common problems as pain, fatigue, and lack of understanding from the surroundings. Younger people might be more worried about being different, achieving independence, ableism, finding a job or a partner.

Articles are now coming out of our IMPACT survey, documenting the impact that OI has on adults, teens, children and caregivers. One of the first articles published, showed that fractures are not among the common problems for adults with OI. Actually, it was down at nr. 13 on the list of health-related issues adults with OI had been dealing with the last 12 months. We have been saying this for years – fractures are not the most important thing for adults with OI. It cannot be the only thing to measure when it comes to how successful new treatments and interventions are.

But unfortunately – fractures do still happen for adults with OI, as it did for two of my dear OI friends in the European OI-community the previous week. And when you fracture as an adult, the consequences might be so much bigger than they were when you were a child. Suddenly you are back in hospital and doctors are not sure how to operate you, because they don’t have much experience with adults. Your freedom, mobility and independence are lost. Maybe for a while. Worst case scenario – for ever. You’re suddenly out of work and plans needs to be cancelled. If you live in the wrong country, you might even lose your job. Just because of a fracture…

And the worst thing – fractures still hurt like hell. Maybe even worse than they did before. Because fractures trigger things from the past. Pain. Fear. Difficult emotions, that you might have suppressed for many years. Before OI strikes again. And life is again put on hold…

With permission from the two people involved, I include a story about the couple Chris & Connie from Switzerland, who both have OI. Chris spent many years as an adult with little impact of OI in his life. He had a nice job that he loved, played music as a hobby – and married the love of his life, Cornelia, who also happened to have OI.

Then suddenly several accidents happened to Chris during a period of a couple of years. Small stupid accidents, which caused complex fractures and turned his life upside down. But through hard work and good rehabilitation – he managed to get his life back. It was not the same as before, but still good. He even became a star on Swiss television!

And then OI struck again.

His wife Connie took a fall and suffered a femur neck fracture a few days ago.
With permission from Chris & Connie I include a quote from Chris:

During hard times like this, it’s invaluable to have the support of your friends and the OI-community. And sometimes also the OI-organizations. Because we are not unbreakable – but we are stronger together.”

Ingunn Westerheim, OIFE president