Q for Quality
What is quality of life? I guess there are almost as many answers to that question as there are people on the planet. During one of the sessions at the ECRD conference, we were asked to use an app to create a wordcloud of what really mattered regarding quality of life. The words that got the top rating were dignity, happiness, ability, autonomy, normality and participation. Many of them I can agree on. I’m not so into being normal now. But when I was younger it was very important to me. Autonomy and independence however are very important values for me. So is participation and happiness.
Speaking of happiness. I’m pretty happy with my quality of life at the moment. After the longest and snowiest winter in 35 years, summer came as an explosion after a very short spring. May has been the warmest month in 100 years in Oslo.
Global warming should probably worry me more, but when I walked along the harbour last Saturday, I could feel nothing but pure happiness. While wearing my golden sandals, and experiencing 27 degrees celsius, sunshine and a mild warm breeze, I could see shiny happy people everywhere. Some of them jumped in the ocean for a refreshing swim. Some were enjoying a nice meal or a drink at one of the many new restaurants that have popped up at the Oslo waterfront Sørenga. And the normally reserved Norwegians were smiling, greeting and behaving euphoric after 3-4 weeks of amazing summer weather.
Yesterday I got a new manual wheelchair. It’s a brand new lightweight chair of the brand panthera – only 8 kg with wheels and specially adapted for my needs. Not too tippy, but still very light to push and maneuver. This reminds me how privileged I am to live in a country like Norway. If you are disabled, you get a wheelchair from the state without paying anything at all. We can get both a manual chair and a power chair, and we don’t have to choose between the two because of insurance.
Coming back to quality of life again – having a mobility aid that works for you, can be incredibly important for a person’s ability, autonomy and independence. Through OIFE I have become connected with hundreds of people with OI worldwide on Facebook. And I get sad when I see people who would have a complete other level of independence and mobility if they just had a better wheelchair. Some don’t have wheelchairs at all, which makes it impossible to get an education and a job and leads to isolation. Some have wheelchairs that are poorly adapted, which make them dangerous and easy to fall out of. Some of the worst cases of fractures I’ve heard of often comes from a fall from the wheelchair. With safer and better adapted chairs, many of these accidents could have been avoided. Having a better adapted and lighter chair would also make it easier for children to play independently with non-disabled children, for young people to hang with friends or to travel and for adults to keep a job and a social life.
So bisphosphonates, physiotherapy, ortho-pedic surgery are all very important. But I wish we could focus a little bit more on occupational therapy and how important daily living function (ADL) is both with and without mobility aids. If people have a nasty upper arm fracture, they can go from being totally independent to needing an assistant 24/7 because they cannot go to toilet by them-selves. THIS is the kind of things that are affecting quality of life for people with OI. A severely disabled child who starts mobility training at an early age, can sometimes achieve small miracles when it comes to independence.
This is the kind of topics I hope the professionals involved in the Key4OI-project initiated by Care4BrittleBones (Care4BB) will address. OIFE is currently not in the steering committee of this project. The main reason is lack of resources. Research is not one of OIFE’s main priorities at the moment. But we will find ways to work together with Care4BB and the professionals, to make sure that the voice of people with OI are heard when discussions on outcome measures will take place. There will also be plenty of possibilities to interact at the planned conference about the same topic in November 2019, where OIFE will play a role. Until then you can read more about the topic in the report from Care4BB and from Claire Hill, who represented OIFE at OIF’s annual investigator meeting in Chicago.
I hope to see many of you in Dundee in August where we will celebrate the 25th anniversary of OIFE and the 50th anniversary of the Brittle Bone Society – the oldest OI-organization in the world! I wish you all a wonderful summer (or winter if you are down under).