It's been a full-on day or so since I last posted, but wanted to jot down some highlights for you:
We've met two other sets of twins at the conference - both Danish. They are lovely ladies and it was special to share some "twin" things as well as some Turner's stuff.
We managed to find our way by bus to the conference venue - a bit of a mission, but feel very chuffed that we've managed to not get too lost so far!
The Australian president of the TS Group is here, and we had a chat with him about support groups - would like to pick his brains a bit more...
The lectures we've heard have been good - a little disappointing that nothing really new has come through, but the ideas and thoughts have been great. I'm so grateful that I have a great command of the english language in a situation like this...
Had dinner with some delegates from the UK - very cool people to get to know... The dinner was yum, too!
Better make this do and get some breakfast. On to another day at the conference :-)
Friday, August 28, 2009
Thursday, August 27, 2009
Musings from Denmark
Another day has almost been and gone, but its been quite a day. Ruth and I went to a reception for the conference at the Copenhagen Town Hall this afternoon and the mayor himself gave a speech! Had we been told not to have any lunch, we might have enjoyed the amazing buffet put on for us... I still enjoyed something sweet to wash down the Burger King meal we just had, though!
I walked into the amazing hall that the reception was held in and was immediately smiling for all the people that were as tall as me, or shorter, even! Its so much nicer to be talking to someone who is the same heigh, let me assure you! And there were some that gave me a hug, and even that felt easier. Just a little thing, but made my life so much easier, and I think it makes me more confident when I'm around others the same height who don't intimidate me quite so much... But, as I was saying to someone today, this condition shouldn't be all about the height as there is way more to me that that. My height should not be defining who I am. I significant lesson to take away, I think.
But back to the reception, I met a woman from Germany and had an interesting chat with her as she was quite tall (I would say 'normal' height!) but she said that both of her parents were tall and that made her that little bit taller than would be usual for Turner's women. We also chatted about the support groups we attended and the similar issues our groups faced... I shared with her how I feel the world isn't built for the likes of us 'shorties', but that there are plenty of positive things about being short. I also had a conversation with an english women who wasn't diagnosed until she was 31! She was normal height, too, and is here with her husband - one of only a handful of partners/husbands that I saw today, which is interesting.
Ruth and I also met a group of Japanese women at the reception and they were very interested in hearing about what New Zealand was like and it turned out that one of the women has lived in New Zealand (Omaru!) for a year! There are 30 delegates from Japan here, including a keynote speaker at the conference, a peadiatric doctor, and a genetic nursing student, which says something about the importance of the conference and finding out about Turner's to the Japanese community. The ladies I met were lovely and yes, some of them are staying at the same hotel as us. It was quite difficult to communicate with them, but they had a guide and he helped a little to translate...!
Later on, after the reception, we had a free canal tour, which Ruth and I went on... Beautiful surroundings, but it was hard to see from the boat for the glass cover, and the people packed on the boat made it difficult to take photos, but I got one (only just!) of the Royal Library - just had to get a pic! It was lovely to see a bit more of the city. Oh, and Ruth and I found the National Museum this morning and we spent a few hours having a look as it was free entry.
The conference starts for 'real' tomorrow, so I'l be able to share some highlights of the conference and what I'm thinking and hearing about then.
I walked into the amazing hall that the reception was held in and was immediately smiling for all the people that were as tall as me, or shorter, even! Its so much nicer to be talking to someone who is the same heigh, let me assure you! And there were some that gave me a hug, and even that felt easier. Just a little thing, but made my life so much easier, and I think it makes me more confident when I'm around others the same height who don't intimidate me quite so much... But, as I was saying to someone today, this condition shouldn't be all about the height as there is way more to me that that. My height should not be defining who I am. I significant lesson to take away, I think.
But back to the reception, I met a woman from Germany and had an interesting chat with her as she was quite tall (I would say 'normal' height!) but she said that both of her parents were tall and that made her that little bit taller than would be usual for Turner's women. We also chatted about the support groups we attended and the similar issues our groups faced... I shared with her how I feel the world isn't built for the likes of us 'shorties', but that there are plenty of positive things about being short. I also had a conversation with an english women who wasn't diagnosed until she was 31! She was normal height, too, and is here with her husband - one of only a handful of partners/husbands that I saw today, which is interesting.
Ruth and I also met a group of Japanese women at the reception and they were very interested in hearing about what New Zealand was like and it turned out that one of the women has lived in New Zealand (Omaru!) for a year! There are 30 delegates from Japan here, including a keynote speaker at the conference, a peadiatric doctor, and a genetic nursing student, which says something about the importance of the conference and finding out about Turner's to the Japanese community. The ladies I met were lovely and yes, some of them are staying at the same hotel as us. It was quite difficult to communicate with them, but they had a guide and he helped a little to translate...!
Later on, after the reception, we had a free canal tour, which Ruth and I went on... Beautiful surroundings, but it was hard to see from the boat for the glass cover, and the people packed on the boat made it difficult to take photos, but I got one (only just!) of the Royal Library - just had to get a pic! It was lovely to see a bit more of the city. Oh, and Ruth and I found the National Museum this morning and we spent a few hours having a look as it was free entry.
The conference starts for 'real' tomorrow, so I'l be able to share some highlights of the conference and what I'm thinking and hearing about then.
Wednesday, August 26, 2009
Hello from Copenhagen!
It took ages, but we're finally here...! It seems amazing that we're here in Copenhagen, but even more incredible that we met one of Ruth's friends (also here for the conference) at the airport as we were coming in! It took awhile to find the right train, but we got here, found our hotel, and we've managed to find an amazing outdoor market where we had dinner... Had a fantastic atmosphere. And it helps that it's lovely weather here - still warm and light at 8 o'clock at night!
Ruth had an email from the conference organisers just before, and we've been invited to a reception at the City Hall tomorrow afternoon, then a canal cruise in the evening. Looking forward to it! Earlier, at the market, we saw a group of "shorter" women and wondered if they were here for the conference... oh, and I think we've just seen some women from Japan come into the hotel for the conference. It's all happening, and feels exciting to be a part of this experience!
I think I'll be able to get some photos up, so will give that a go next time. Better give others a chance on the computer... 'Till next time!
Ruth had an email from the conference organisers just before, and we've been invited to a reception at the City Hall tomorrow afternoon, then a canal cruise in the evening. Looking forward to it! Earlier, at the market, we saw a group of "shorter" women and wondered if they were here for the conference... oh, and I think we've just seen some women from Japan come into the hotel for the conference. It's all happening, and feels exciting to be a part of this experience!
I think I'll be able to get some photos up, so will give that a go next time. Better give others a chance on the computer... 'Till next time!
Saturday, August 22, 2009
1 more sleep!
Yep, we have one more sleep to go before we head off on our adventure! The bags are packed, the passports are dusted off, and the money has been changed...
Really looking forward to the conference - it'll be amazing to meet other women with Turner's, and it'll be a bit of a novelty to have people the same height as me to talk to without breaking my neck to look them in the eye! I'm wondering if there will be any parents, siblings or partners of women with Turners attending the conference... having Turner's impacts on the wider family, so it'll be fantastic to see some of these sorts of people there.
Meanwhile, we have a couple of long-haul flights ahead of us, which I'm not looking forward to, but I'm grateful that I have someone like my sister to share the journey with. Getting excited to be able to experience something like this with her.
Before I go, I just wanted to say thank you to those people that have supported us in the decision to attend the conference, and for your interest in the journey we're about to begin.
Catch up with you from Copenhagen!
Really looking forward to the conference - it'll be amazing to meet other women with Turner's, and it'll be a bit of a novelty to have people the same height as me to talk to without breaking my neck to look them in the eye! I'm wondering if there will be any parents, siblings or partners of women with Turners attending the conference... having Turner's impacts on the wider family, so it'll be fantastic to see some of these sorts of people there.
Meanwhile, we have a couple of long-haul flights ahead of us, which I'm not looking forward to, but I'm grateful that I have someone like my sister to share the journey with. Getting excited to be able to experience something like this with her.
Before I go, I just wanted to say thank you to those people that have supported us in the decision to attend the conference, and for your interest in the journey we're about to begin.
Catch up with you from Copenhagen!
Monday, August 10, 2009
Welcome...
... to my new blog!
I'm Anna and I've started this blog to record a journey that my twin sister, Ruth, and I will be taking in a few weeks. We both have Turner's Syndrome, and we'll be heading to the International Turner's Syndrome Conference in Copenhagen, Denmark at the end of August!! It's all hard to believe, and we're not sure if there will be anyone else going from New Zealand, but it'll be fantastic to share this experience with my sister. We are also going to visit family and friends in the UK which will be exciting.
So what is Turner's Syndrome? Very briefly, and without going into too much medical detail, Turner’s Syndrome is a chromosome disorder that affects one in every 2,500 live female births. The cause of Turner’s is the total or partial absence of one of the two X chromosomes in some or all of the body cells. The most consistent features of Turner’s are short stature (usually 143cm, or 4’8”) and infertility. Secondary physical features include low hairline, webbed neck, pigmented moles and puffy hands and feet at birth. Ear infections, eye problems, dental abnormalities, heart problems and an under-active thyroid may also occur in women with Turner’s.
I'll be explaining more as the blog evolves, but the idea of this blog is to create a place to share the highlights of the conference (for the benefit of people back here in New Zealand) and to document the personal experiences before, during and after the conference. Along the way, I'll be sharing a little about how I was diagnosed and what life has been like to live with Turner's as things come up, and add some photos to make it more interesting!
I'm hoping that you'll feel a part of the journey, and that you'll be interested in coming along with me for the ride through this blog!
I'm Anna and I've started this blog to record a journey that my twin sister, Ruth, and I will be taking in a few weeks. We both have Turner's Syndrome, and we'll be heading to the International Turner's Syndrome Conference in Copenhagen, Denmark at the end of August!! It's all hard to believe, and we're not sure if there will be anyone else going from New Zealand, but it'll be fantastic to share this experience with my sister. We are also going to visit family and friends in the UK which will be exciting.
So what is Turner's Syndrome? Very briefly, and without going into too much medical detail, Turner’s Syndrome is a chromosome disorder that affects one in every 2,500 live female births. The cause of Turner’s is the total or partial absence of one of the two X chromosomes in some or all of the body cells. The most consistent features of Turner’s are short stature (usually 143cm, or 4’8”) and infertility. Secondary physical features include low hairline, webbed neck, pigmented moles and puffy hands and feet at birth. Ear infections, eye problems, dental abnormalities, heart problems and an under-active thyroid may also occur in women with Turner’s.
I'll be explaining more as the blog evolves, but the idea of this blog is to create a place to share the highlights of the conference (for the benefit of people back here in New Zealand) and to document the personal experiences before, during and after the conference. Along the way, I'll be sharing a little about how I was diagnosed and what life has been like to live with Turner's as things come up, and add some photos to make it more interesting!
I'm hoping that you'll feel a part of the journey, and that you'll be interested in coming along with me for the ride through this blog!
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