Unbreakable Spirits29 Mar 2011
I’d like to share something exciting with you that I experienced over the past weekend..... I attended my very first OI Conference... The Australian OI Conference is organised as part of the OI Society of Australia, which exists to provide a support network and information for people with Osteogenesis Imperfecta or more commonly known as and easier to pronounce, brittle bones.
As my regular readers will know, I was born with OI and have endured over 300 fractures in my life and had countless surgeries. I use a wheelchair to get around, but can walk a little bit, with the assistance of crutches. I have been doing this job, blogging/networking, for almost 2 years now, and only when I began working in the disability
field, did I get in contact with so many other people from around Australia and the world who also share my condition.
There have now been 11 National Australian OI Conferences held, and I think I have only attended one before, when I was a baby. So I thought I would go along and check out what it all involved and meet some others who share some of my daily experiences in life.
I checked into Collaroy House, located in the very beautiful surroundings of Sydney’s Northern Beaches, on Friday at 5pm, and stayed until about 4pm on Sunday. Not ever having been to an OI Conference before, I was very unsure of what to expect. I was paired up with my new ‘roomie’ for the weekend, Ace, who was in her mid twenties and used an electric wheelchair to get around, we had never met before, but certainly got along well and enjoyed chatting to each other about shoes, clothes and all things girly.
We all had dinner in the dining room, where I got to finally meet a lot of my Facebook friends and blog followers in person, which was great! We then learnt a lot through a presentation, about travelling around the world or the country with a disability.
Next day was jam packed with info and advice for living with a disability. Such as; new findings on the subject of OI, a talk about spinal complications that can arise with OI, which scared the HELL out of me and left me wondering which cliff in Manly I should jump off! (Scoliosis, Lordosis and Kyphosis, or curvature of the spine, are all very common within patients with OI), I learnt a lot about things that need to be done to prevent curvature, all of which are required before about age 10...... This caused all of us adults to view our future spinal health as quite bleak.
We then had a chat with a small group of the young people at the conference, to discuss anything they may be concerned about facing in the coming years.
We learnt about Basilar Impression, which is a very scary complication that can occur, where the base of the skull rubs on the spine and can cause sudden death if not treated with surgery, this is rare but a possibility amongst people with OI and is something that should be well known, so symptoms can be recognised.
Next was lunch, where we all chatted about our fears and thoughts of the morning’s discussions. The afternoon brought on speakers about OI issues for pre-school and primary school children, the Northcott Society, a disability
service, Connected for Kids, which is a connective tissue clinic where research into genetic conditions is carried out.
Following on in the afternoon with Practical Living Tips for people with disabilities, which was presented by fellow OI wheelchair users, who provided some wonderful insight about how to become more independent whilst living with a severe disability.
Fiona Winters, who has OI and is mother to three beautiful children, was next to talk about women with OI having children, the effects and options available.
Dinner followed, and then we all gathered together for an Aussie themed trivia night, which was so much fun. Trivia finished at about 9pm but a few of us gathered together in another girls room and stayed up talking until about 2am, which we learnt was quite silly the next day, as we were all so very tired! But we had lots of fun and I’m sure could’ve lasted until sunrise...
The last day snuck up on us, far too quickly, where we listened to discussions about current research results for OI, transitioning into the adult system, treatments that are available for OI, Hypermobility (overly flexible muscles and joints, which is quite common with OI), Living Life as a Teenager with OI, then it was my turn to talk about NOVA Employment and getting a job in general with a disability.
Lunch was next, our final lunch together for the 2011 conference, followed on by a talk about Wishbone Day (an OI awareness campaign www.wishboneday.com ), finally we watched a beautiful video of the weekend which I have attached the link for here: http://www.youtube.com/watch?v=5KQ9yqr0e2E
Please take a look as it’s a wonderful clip that sums up exactly how gorgeous and brave all of our OI family is, despite what we all go through!
Saying goodbye was difficult, as some of the families live interstate and the next conference won’t be held until 2013. As I said, this is the only OI conference I have attended in my adult life, and for anyone with OI who hasn’t been to one before, I highly recommend it, as I learned so much new information, and have widened my support network immensely and made some great friends out of it.
There will be more photo’s to follow once I receive them... So stay tuned!