There is perhaps no consistent theme in the January edition of the OIFE Magazine. But maybe I just haven’t looked close enough? After thinking about it one more time, it occurred to me that maybe the theme of this newsletter is to dare? The Portuguese project you can read about in this edition was called “Dare to live” or “Atreve-te a viver” as they say in Portuguese. In the APOI-project people with OI challenged their fears and boundaries, either by swimming with dolphins or climbing walls.

Penny Clapcott on the other hand is definitely a daredevil. Sometime she’s dangling outside mountain cliffs from the hands of a nutty Norwegian. Other times she’s hanging in straps from the ceiling at the opening of the Paralympics or other events. In the OIFE magazine you can also read that professionals have trusted us with their time and dared to become part of OIFE’s new medical advisory board. And some would perhaps claim that editing our genome, like Fleur van Dijk is doing is a daring concept.

Our youth coordinator Stephanie, dared going on a desert safari in Jordan, but she did not dare to go camel back riding. That is totally ok! Fortunately for us the Dutch youth group dared to host the OIFE Youth Event and people from many European countries dared to attend. Some of us dare to run organizations and take on projects that we have never tried before. This can be pretty scary at times but very rewarding as well. And most people with OI dare to go on time and time again. Even after fractures, injuries, disappointments and frightening experiences. Perhaps we are the real daredevils?

We should dare to

  • dream
  • ask for help when it’s needed
  • get an education and a dream job
  • quit the same job when our bodies have had enough
  • be sad and disappointed – we can still be positive people
  • give our hearts to someone, even if they might not want it
  • get up on the horse again, even if it’s just a metaphoric one
  • admit that we’re sometimes over achievers
  • take part in research projects
  • aim for a cure, but strive for good quality lives in the meantime
  • travel to foreign countries, but bring our OIFE passports in the pocket
  • realize that all our problems doesn’t relate to OI
  • dive in to deep sometimes
  • address the difficult topics – like depression, basilar invagination, child abuse, obesity, sexuality, anxiety and the feeling of loneliness
  • share our experiences with others who need information and advice
  • ask for a second opinion when we don’t trust the medical advice we are given
  • let our children be active and avoid wrapping them in cotton
  • collaborate – sometimes we manage to get further together
  • speak up when we don’t agree
  • do things differently
  • let our children dare the same things as others…

Perhaps this was a wishywashy editorial. But I dared to write it, just like I dared to hold the alligator. I wish you all a Happy New Year in 2018. Dare to make it a good one!

Greetings from Ingunn – OIFE president