A few days ago, I returned from the national Osteogenesis Imperfecta (O.I.) conference. It was held in Washington DC 
this year. I've been to the bi-annual conference four other times in my life but I wasn't able to make the last two because they always conflicted with major swim meets (like the Paralympics!). The conference lasted for three days and included informational sessions during the days and social events at night. I'd been looking forward to the conference for months, but even my ridiculously high expectations were surpassed!
[Photo caption: Me and my fiance at the conference's dinner and awards banquet.]
By my age, some people find the sessions a bore. I see their point in a way. For most people with this condition, it's not entirely necessary to understand the origin of the genetic mutation that causes O.I. or gain an understanding of the changing legislation and it's impact on advocating for the special needs of a child with O.I. Not only am I personally interested in different aspects of O.I., but it's become a professional focus since I've been researching the psychological aspects of the condition for my dissertation. I've attended ALOT of conferences and one of the most impressive features of this one was the mass attendance by the leading researchers, scientists, and practitioners that work with the condition in some form each and every day. I can't count how many professionals I'd meet and recognize their names from the reference sections of my dissertation. As a person with O.I. AND a researcher, it's an amazing opportunity to have the top figures in the field there in person to ask questions and talk about ideas. Most of what I learned would likely put you to sleep at your keyboard but you might find interesting....
- While the rate of O.I. in the US is about 1 in 25,000, 1 in 100 people in Africa are carriers for the condition. It's believed that O.I. was brought to this country through the slave trade.
- There are now 8 identified types of O.I. Mine is Type V and is estimated to represent 5% of the O.I. population. I've never met anyone else with Type V.
It's hard to narrow down my favorite parts of the conference...The little kids are by far the cutest in the world (and this comes from my unbiased opinion of course) and I had the chance to speak to a group on swimming one night. Several already swim for able-bodied teams and their parents were interested in the format for adapted swimming and the road I took to the Paralympics. The kids, however, were much more impressed when I mentioned the words wheelchair football. Probably not the most fitting sport for kids with brittle bones, but I don't have much room to talk. I'm still not over my obsession with gymnastics!
I've always considered the rarity of O.I. a blessing of sorts because people affected and our loved ones create a community that's just large enough to reach even rural areas but small enough that I could recognize people I met from my first conference when I was around 9 years old! Each state or region has a closer-knit group that usually has a chance to meet a few times a year. From Kentucky, I've known two other girls since they were born! It was so nice to spend time with them and their families. I also met so many new friends and had the chance to connect with people I've spoken to online for months and even years! There were dances, dinners, and a talent show. I got advice on my next car purchase, home adaptations, and wedding plans! There were two other brides-to-be in the group so we practiced our picture posing over the weekend.
[Photo caption to the left: My two friends with O.I. that are also from Kentucky. Rebecca is on the left wearing red, Mary Alice is in the middle, and me on the right.]
If there's a downside to the conferences, it's definitely the abrupt end that hits you when you come home. It's really nice to be surrounded not only by friends but by people that truly understand an aspect of you that the rest of the world can barely pronounce. I'm all for inclusion, but more than a few times this week I've daydreamed of how nice it'd be to live in our own little village! The ending for my fiance and I was a little more abrupt than usual due to a horrible airport experience but the fact remains that getting a dose of community is good for the soul. The 2010 conference will be in Portland Oregon. Two years is a long time to make this dose last but I plan on keeping in touch with contacts and looking into the possibility of buying our own island! Of course my island will have wireless because no disability community would be complete without Disaboom!
Have you ever wished you could elope to a land where everyone gets it?
Here are a few other pictures from our trip:
[Photo caption: Michelle, a fellow engaged Floridian with O.I., me, and a new friend, Kristal, smile while holding up our left hands to show off our engagement rings.]
[Photo caption: Me posing with three little ones on the dance floor. It took some convincing to get them to take a break. I bribed them by promising to request the Macarena after this shot.]
[Photo caption: Further evidence of cuteness in the OI gene pool! Here's me with two of my youngest new friends. Again a pest, I interrupted a game of "Go Fish" for this. Oh and their parents are pretty cool too!]
[Photo caption: As an added bonus, I got to see my former swim coach, Tanya and her husband, because they live in DC. All the more reason that it's among my top three favorite cities in the world! Here we're smiling in the hotel lobby after lunch.]
[Photo caption: Me, Lilly, and Kalyn taking part in what would be my first and likely last karaoke experience! I'm not known for my voice...but Kalyn is!]
