In February I turned fifty. 50 years! When I see the number, I still cannot really grasp it. When I was younger, I felt fifty sounded really really old. And maybe it is? After all – I have probably lived more than half of my life.

Have I accomplished everything I want? Do I still have new adventures to look forward to? Is there still a chance to improve my health or is it only downhill from here…?

I thought a lot about these questions in advance of my birthday. And then I dealt with the gloomy thoughts my own way – by throwing the biggest party I have ever done. Great Gatsby style with fancy cocktails, fancy dresses and lots of good friends and extravaganza. It helped a little. Because age is just a number, right?

Or is it really? I still feel young and even childish in my head. In my OI body on the other hand, I can feel those 50 years and around 50 fractures quite well. My chronic pain is getting worse. I have arthritis in my fingers, my hips and my shoulders are starting to act up too. And I struggle to sit up straight or comfortable in any position. I think I might need a corset again. But is this just creating other problems?

I know I should exercise more, but I just cannot get around to do more than my weekly swim. Especially since I get more pain after exercising. And no, it’s not the «good kind of pain» which makes you feel happy after working out. Exercising triggers my other pain. The bad and scary one. Inflammations, irritations and nerve pain. And this also affects my sleep.

And speaking about sleep, I now need ridiculous amounts of it. Before I could survive on 6-7 hours. Now I need between 10 and 12. And if I don’t get enough – I wheel around like a zombie until I find a bed or the next triple espresso. And this stupid need for sleep gives me very little time to do everything that I want to do – volunteer work, exercise, travel, hang out with friends. Which causes even more stress. Do I have enough time to reach my goals? How many years left do I have before I need to travel with an assistant? Or before I am too tired to travel at all…?

Am I the only one who feel like this? Like time is running out faster if you have OI? And that I need to hurry to do everything before my body fall apart. Because let’s face it! Statistics do not look good when it comes to ageing with OI. Especially for OI women after menopause. Which makes it even more puzzling why we hardly know anything about what happens after 50. What we can do to prevent more fractures, more pain and joint problems. It’s like a big black box. And it’s frustrating.

According to the IMPACT survey, people with OI worry a lot about these things. Around 50% of people with OI worry a lot about getting older and a larger percentage worry a lot about losing their mobility. Many also worry a lot about fractures, OI complications and losing independence.

Next year we are doing something about this. Our big topical meeting, which takes place every third year, will be held from June 18 to 21 in Copenhagen, Denmark. And the topic in 2026 will be phases of adult life with OI – including transition from youth to adulthood, but also from adulthood to older age.

Would you like to learn more about what you can do to prevent complications? Or share your experiences? Or contribute to discussions with professionals and industry on what they can do to ease some of our worries? Then put the date in your calendars already now!

Because a lot of things can be done. And problems can most likely be prevented. We just need to gather more information and fill the knowledge gaps with more research. Based on what we find – we need to develop advice on how we can live better and healthier lives with OI – also when getting older. And how the professionals can support us in doing so. And we want to do it from a positive perspective – hopefully more positive than this editorial. Because fifty is not the end. It’s only a new beginning…

See you in Denmark in June!

Ingunn, OIFE president