Finding my #BBSVOICE16

The 29th April - 1st May 2016 Brittle Bones Society VOICE 2016 - A weekend that I will never forget.
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It's where I met my Osteogenesis Imperfecta (OI) family (not literally, but you'll get what I mean) for the first time. This has been 22 years in the making but finally I had the opportunity and the courage to meet with others people with OI. It must have been my lucky day because it also happened to be the occasion where the Brittle Bone Society (BBS) teamed up with the Osteogenesis Imperfecta Federation Europe (OIFE) teamed up for the first time to host this event together.  And what a weekend it was... partying, sporting and general craziness in one bundle of a weekend! 

The BBS defines the Youth events focus as being: 

The Brittle Bone Society hold this annual event, in April or March each year, for 16 to 30 year olds with Osteogenesis Imperfecta. This is an opportunity for our youth members to meet and socialise with each other, learn new skills, hear talks from healthcare professionals, and to take part in forums and workshops.

And to their credit, OIFE and BBS delivered on all counts!  Below you will find a brief summary of the days and my thoughts.

Friday

The day of arrival!
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I was a fit of nerves, anxious before we had even started the journey. Even Kasia has started to experience the overflow of my nerves. While this event had been months in preparation, I don't think I fully anticipated how much this would effect me. 

Questions started flowing around my head, will they like me? will I fit in? was I ready to meet a whole group of fellow individuals with OI?

This feeling had been perpetuated by my parents always sheltering me from people from OI in my past. While they had their reasons, which they never disclosed to me, it worried me what their reasons were. Was it because they believed I was not emotionally ready to understand the full gravitas of my condition and the variety that exists within it? 

As we pulled into the hotel, we were welcomed by the massive wine tower in the heart of the hotel (to do this justice you really do need to Google it!).  After checking in, Kasia and I had intended to go and chill out until the program of events began at 7pm that evening. However, after we moved into the hotel room and I went downstairs to register with the BBS team I got sucked into the OI Community. When the stories and drinks started flowing I could have not felt more comfortable within the group. The bunch were friendly, inviting and banter-ific. Then I knew, they were going to become a part of my life. 

Hours passed by and eventually it was time for dinner and pub quiz. The buffet style food was magnificent and the pub quiz which followed which was meant to be a mixer activity went a storm. 'The Smashers' team, which I was a part of, failed to win (we did come a respectful 4th and did mark the winning teams answers) but we will be back again next year! 

Saturday

The day I took 12000 'steps'! More on that later though.

Saturday was the main part of the VOICE event. It was packed with talks from healthcare professional and workshops followed by a fancy 3 course meal and of course, all good 3 course meals are followed by a DISCO! 

We had the pleasure of hearing from:

• Dr Richard Keen; Progress in OI Services
• Dr Lydia Zhang; The RUDY Study
• Chris Clark; Transition
• Claire Hill; Quality of Life
• Coreen Kelday; General Discussion 

Each of these sessions were so innovatively different and interactive in ways that I am not used to at youth events/ conferences. Not only was I able to see familiar speakers from my past speak on what was going on in the world of OI and Rare Disease, it was great to learn new things about OI and about the experiences of others with OI. 
Some interesting things I picked up from it were:

- Online Patient Passports being created through the RUDY study; 
- That there is great examples of transition services for those with rare diseases and other chronic health conditions in foreign nations such as the Netherlands;
-  There is no OI specialist for OI Adult Services in England & UK;
- OI Passport created by OIFE, useful for people with OI who want to travel!

The experiences and expertise I found from these sessions I will be sure to share far and wide when I go out on my advocacy tours! 

​Once the workshops and talks had passed there was some free time to chill, I took advantage of the hotel's comfortable sleeping arrangements to catch up on some Zzz's before the big night! 

The three course fancy dinner was stunning, what was more impressive and delightful to see what how well turned out and in yellow the other young people were! 

Post - dinner, the lights dimmed, the smoke flowed and the dancing consumed the floor and we danced into the early hours of the morning while sipping on delightful drinks from the bar. 

When I retired to my room in the early hours of the morning I was shocked to see that I'd taken over 12,000 steps through the days rigorous activities and lost over 800 calories. What a way to close off a perfect night! 

Sunday

Sunday began quite abruptly and the haunting realisation that this would be my last day with my OI Family was gloomy and heart wrenching and the fact the first call of the day of sports somehow made my heart sink more...
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While the sports sessions started off rather slow and lacklustre we all soon got into the spirit of things thanks to the energy and spirit bought by Darren Rees, our instructor. We started of with various warm up leading up to a inventive spin on 'musical chairs' followed by a rather competitive game of baseball. It was an energetic morning and I have never wanted to get more involved with sport than just after this session. I have a new passion to explore disabled sports and to see what I can get involved in! 

Then the inevitable soon came! The Goodbyes! This was the hardest part of the weekend for me. I had become so close to this group of people, I felt as though I was leaving a part of me behind. Fighting back the tears, I said my goodbyes in the knowledge while this maybe be it for now we will all meet again at the BBS AGM in August or at the next VOICE. 

This weekend had been a wonderful experience for me, I have managed to find a whole new community of whom I never want to part from, a group of people whose banter is second to none and a community to whom I can relate to and get support from. A truly international community bound by an unbreakable spirit. 

I would like to thank the BBS and OIFE for organising and for giving me and my girlfriend a chance to attend. Until the next time, stay awesome.