I had the amazing privilege of attending the International Turners Syndrome in Copenhagen in Aug 2009. I was fortunate enough to receive funding from the Lottery Grants Board to attend the conference, and I’m very grateful to have had the opportunity to share this experience with my twin sister, who also has Turners. Here are some of my reflections, some things I took away from the conference, and some photos that capture some of the highlights of the experience.
Arriving in Copenhagen was a journey in itself – after more than 24 hours traveling, we were more than ready to stop and chill out! Fortunately, we had a day to check out the sites of the city before the conference, so we used that time to work out where the conference venue was, and how to get there by bus from our hotel. It was easy when you knew how!
Before the conference started, we were invited to a reception with the mayor at the Town Hall. Yes, we were officially welcomed to Copenhagen, along with about 300 other delegates at the ornate, historical Town Hall. The only problem was we didn’t know there was going to be a huge buffet lunch provided…we had just eaten Burger King beforehand! But we couldn’t resist sampling some of the food laid out for us in true Danish style.
It was a unique and almost surreal experience walking into the big grand hall at the Town Hall and seeing the other delegates from around the globe for the first time. I had met other Turner’s women before, but not so many in one place all at once! I began to feel almost ‘normal’ around ladies who were the same height as me, where I didn’t have to constantly look upwards to communicate with them, and where we all shared something in common. Later that day, we were given an opportunity to take a canal cruise around Copenhagen, specially charted for delegates of the conference, and that was pretty cool – it would have been one of the highlights of the conference for me.
Another highlight was meeting two other sets of twins with Turners at the conference, both from Denmark. This was a unique opportunity to compare stories not only on having Turners, but about being twins. We could relate together on a level that was pretty special because we were twins, and had Turners in common. I think we became famous because when we got together, everyone wanted to take photos of us!
The content of the conference was great, and was relevant for everyone, including the doctors, counselors, parents and partners of Turners women who attended. While it was a little disappointing not to hear anything new that had been researched etc about Turners, what was presented clarified and highlighted some things for me. The main thing I came away with was the huge importance and necessity of regular monitoring of our hearts. I would encourage all Turners girls and women to have their hearts regularly checked and monitored for known cardiac issues in Turners women. An excellent presentation at the conference by a Danish cardiologist, who has a passion for treating Turners women, confirmed the issues and importance of regular cardiac monitoring.
Attending the conference was an amazing opportunity to meet lots of other delegates from around the world, including the US, Canada, Australia, UK, Sweden, Norway, Croatia, Iraq, Germany, Spain, and The Netherlands. A large delegation also attended from Japan, and my sister and I had fun trying to communicate with a lot of these women – it was often a case of wondering what on earth we were saying to each other…! They taught some of us how to do origami at the conference dinner on the last night, which was fun.
Through this experience, I have a deeper appreciation for what I’ve achieved as a Turners woman, and I’m grateful that I’ve learnt to embrace who I am as a Turners women, rather than letting it overwhelm and overtake my life. I can still enjoy life, have fun, and connect with others as a Turners woman, in spite of all the odds. The conference was a significant chance for me to enjoy being a Turners woman, enjoy relating to other women with Turners, and to be given the chance to hold my head as high as I could.
It was an incredible journey that my sister and I will remember for a life-time.
The town hall reception
Origami at the conference dinner