Back home again...

It's been just over a week since we've got back, so I apologise for the delay in posting a new entry. We finally made it back to NZ last Sunday, after a rather dramatic start to the journey home.

We we due to fly from Copenhagen to London, then from London to Hong Kong for a stop-over on the way. We had just taken off from Copenhagen when a bird flew into one of the engines!! Yes, we had to re-land, and there were fire-engines waiting and everything! After waiting 5 hours or so, we were diverted to Frankfurt, then Hong Kong, which turned out to be ok as we arrived in Hong Kong only a few hours later than originally planned. But we didn't have our luggage, so we had to survive in Hong Kong with the clothes on our backs, and a new top each to wear. It was ok, but the airline was very apologetic and we got a free lunch out of it (not much, but it was something for waiting so long to get on another plane!).

Anyway, it's so nice to back home - with my own bed, extra clothes, and TV programmes that are in english! It was an amazing trip away, and I wouldn't change anything, but it's also lovely to back home again.

I'll post some photos soon, once I make some decisions about which ones to put up. Catch you later.

Back in Copenhagen...!

Yep, we're back in Copenhagen, again...!

We arrived from Stockholm this afternoon, and managed to find out hotel near the ariport. We fly out early tomorrow morning, so we're only here for a night. We are in a lovely suburb of Copenhagen called Dargøn, orginially a fishing village, and it's a quaint, pictursque (sp?) place, which we enjoyed exploring earlier on. Cobbled alleys and roads in the old part, with gorgeous flowers lining the alleys and lanes. I even went into the local library (Bibliotech) and was entraced by the old building, the services they offered (just like a public library offers back home), and the amazingness of being able to go into a library here! Ruth took some photos for me - I had to stand by the sign...! We found a supermarket, too, and got something for dinner on the way home from our wanderings.

We can see the bridge to Sweden from our hotel, as this village is by the coast, but it's only a hop, skip and a jump to the centre of the city, so it's pretty unique! The hotel room isn't too bad, but I guess we've become a bit fussy with our rooms over the last few weeks, and this one doesn't really compare...it's a 3-star hotel, and has all we need, and its clean, but it's just not up to the standards we've been used to. It's only for one night, and it'll be pretty quiet, so we'll get some good rest before heading back to the airport at 5.30am in the morning!

Anyway, really enjoyed Stockholm, and exploring the old town with a guide, and then by ourselves, when we had the chance to do some shopping. It's a lovely place, especially when its sunny, like the last few days we've been there, which is apparently not the norm. The islands and lakes of the city create an amazing atmosphere and incredible views, and we even had the chance to see the King and Queen, but missed them as we were desperately trying to find a loo...! Still, it was a fun time, and we had beautiful weather to help, so we couldn't complain. The picture I have included with this post is part of the old town, in one of the main squares. I can certainly say "I've been there!!"

Changing the subject completely, I mentioned briefly last time that one of the gentlemen on the tour has a daughter with Turners, and we only found out the other night when he came up to me asking me if we had Turners. Of course, we got into a disscussion about it, and it turns out his daughter is about 52, from memory. We had an interesting conversation about what it has meant for him and the daughter, and I was inspired to get in touch with his daughter, so I'm hoping he'll send me an email for his daughter. We had the chance to share some things about what it was like coping with Turners, and some of what we had heard at the conference, so that was pretty amazing. And this morning, he mentioned to us as he said good-bye, that meeting us was truely the highlight of his trip, and it has given him more hope for his daughter and how she is coping with having Turners. That was pretty humbling, but also confirmation that we aren't doing too badly with the whole TS "thing", and that we have been coping pretty well with the issues surrounding TS. Acknowleding and accepting the issues for what they are is half the battle, so I'm hoping that as we head home and share with others what the conference has meant, that it will inspire others, and ourselves, to keep hanging in there and managing it day by day. I feel for this dad we met on the tour as he's struggled with understanding his daughter, but hopfully meeting us had given him a renewed sense of what the future could be for his daughter. It'll be great to contact her, and encourage her along, too.

Well, time is marching on, and I have a very early start, so will say 'night' 'till next time...

Of Norway and Sweden

Hello from beautfiul Sweden!

We arrived in Karlstad, in the West of Sweden, close to the Norweign-Swedish border, this afternoon, and had a lovely walk around the city. Its a beautiful city with a gorgeous river running through it, and this evening has been a balmy, sunny evening, which we enjoyed before dinner.

Yesterday, we had an amazing cruise through one of Norway's fjords. It was rainy and midsty, but we still managed to see most of the huge mountains and scenery around. No photo could capture the depth and magnificance of the fjord, but we tried! At the end of the 3-hour cruise, we were rewarded with a beatiful rainbow which looked spectacular against the fjord. Again, words can't really describe the beauty and majesty of the fjord.

We had lots of travelling yesterday, but stayed last night in a little rural town called Farganes, and the hotel was decorated like a gentleman's club... The rooms of the dining hall just keep on going, and Ruth took a dip in their indoor, heated pool, which she said was lovely.

Today, we stopped in Lillehammer, the home of the 1994 winter olympics. We saw the two ski jumps, and saw several jumpers jump amazing heights, which was pretty cool. And we crossed the border, which was funny, as Ruth and I were able to stand in two different countries side by side! We took the obligatory photo...!

So, we're off to Stockholm tomorrow - looking forward to spending our last few nights of the tour there, and checking out the city. We're going on a special dinner tomorrow night, which should be fun, and we get to go on a walking tour of the old part of the city. It's hard to believe we're almost at the end of the tour, but its been an amazing experience, and we'll have lots of memories to take away.

Oh, and we met a Dad of a Turner's woman last night - he's on the tour! So, we'll have to talk more with him and get his email so we can contact his daughter... So amazing that the conference has been connected with the tour!

Anyway, someone else is waiting to use the PC, so better make this do. See you in Stockholm!

Hei from Norway!

We're in Bergen at the moment, and its wet! But its a lovely city with fantastic veiws...apparently!! We went up the venicular this morning, and saw most of the city while it was still clear-ish before the rain really set in... We were fortunate to get up there and see something this morning. The picture I have included here is one of the old town - an amazing area to explore; we walked along the front there and got a "hot dog" and crepe for lunch in a food market that was there along the water-front, before the shops. There is also an amazing christmas shop, which I think is the farthest shop on the right - we just had to go in and purchase something!

Yesteray, as we were travelling from a little place called Bø (pronounced Burr), we drove along a fantastic lake, and then along an amazing fijord - the first one we've seen in Norway, and we had spectacular, sunny weather unitl lunch-time, so we saw the most beautiful part of the county in stunning, superb weather. Words can't describe how beautiful it was, but it certainly reminded me of the Malborough Sounds and Milford Sound back home, but on a grander scale...! It was hilly, rocky and lots of pine trees, and I think the tour director said we would be going through 100 tunnels during the day. Had tons of photo opportunities and we stopped for lunch by a little lake with breath-taking views, which was a welcome break from the bus, but was also the last time we saw the sun for the rest of the day.

We also had a short ferry ride across a fijord on our travels yesterday, which was spectacular (and another great photo opportunity!) and we stopped at an incredible waterfall that you could walk behind... Ruth and I didn't get the chance to walk behind the waterfall because there was a great souviner shop there, too!

We're off to Fragenes (sp?) tomorrow and that should be a good drive through more hills and tunnels. One of the ladies we met at the conference said said lives about half an hour away from Fragenes, so we may get to see her again if she's there. It'll be cool to catch up with her and have her show us around a little while we're there. I'll let you know what happens!

I should start thinking about heading out into the rain for some dinner. 'Till next time!

On the ferry...

...to Sweden!

Yep, as I type, I'm on the North sea (I think!), heading to Sweden. It's been a quiet, calm crossing so far, but we have another hour and half yet, so thought I would post an entry while I had the chance. We were in a port town called Frederickshavn last night, and tonight we'll be in Oslo - amazing!

But we've had fun looking around Cophenhagen, and on the way to the coast yesterday, we stopped in Odense, where Hans Christain Andersen lived. A lovely quaint little town to explore. I was wishing we had a little more time there, but it was still amazing to experience the fairytale writer's home town.

My time on the internet is almost up, so will make this do until next time.

Of Mermaids, Palaces and Castles

We had a tour of Copenhagen today as part of the first day of our tour around Scandanavia...yes, we saw some things that we hadn't seen before! This morning, we saw the Little Mermaid - a little sculpture gifted to the city around 90 years ago, and the winter palace the Queen and her husband reside in over the winter, amongst some other things. We were dropped off by the town hall for a few hours before heading off on a tour of the castles of Zealand.

The first castle we saw was amazing inside - the grand hall had tapestries handing all around the walls and they truely looked like part of the structure of the room; you have to be there to really get the full effect! The second castle was the permanent residence of one of the crown princes and his young family (he's married an Australian women), so we couldn't go in, but saw around a little, trying not to get in the way of the armed guards! The third castle was another amazing structure that had a unique courtyard where plays etc have been put on - apparently Shakespare used this castle as the basis for his play Hamlet, and obviously, Hamlet has been performed there. King Fredrick built the castle for his 14 year-old wife...

The picture I have included is obviously the Little Mermaid, the most photographed statue in the world, I believe. We were told today that she will be making a trip to China next year, so if you want to see her in person, you'll need to come and visit! Copenhagen is an amazing city, and I'll miss it when we leave tomorrow, but I'm really glad I've seen around a little and experienced some of what life is like here. And it's been amazing to do this with Ruth, too - we have had our moments, but it's lots more fun to be doing this with her. Yay for sisters, ay!

Feeling pretty tired, but its been a great day getting to know some of the others on the bus. We've just been out to dinner with a women from Taiwan who has lived in the States for the last 30-odd years. She's lovely, and wants to come and visit New Zealand one day, so we may meet her at some stage in the future back home. We're off early in the morning to a place called Frederiksavn, about 480km away, so it'll be a long day, but will try and post something tomorrow.

Hello from Copenhagen - again!

Well, we're back in Copenhagen...again! It feels like ages since I've posted anything, so I have lots to catch up on, but just wanted to let people know things have gone well, it's been really busy, and we haven't fallen off the planet - yet!

Ruth and I have just spent a few days visiting our grandparents in Durham (in the north of the UK, close to Scotland) and it's been lovely to just stop and take things a bit easier with them. We don't know when we'll see them again, so it was particularly special to have this time while we were over this side of the world. The day we arrived, we helped celebrate their 61st wedding anniversary at a lovely hotel resturant, which was pretty special as I don't think I've ever been around to celebrate their anniversary. Mum was also here, so it was a good time to catch up with her before she had to attend the conference she was in the UK for. Funny how you have to travel half-way around the world to catch up with family...!

I have also managed to spend a few days visiting my uncle and aunt in Suffolk which went all too quickly, but was heaps of fun. I tried not to get sun-burned when we took a walk along the coast, near their home, but I enjoyed the yummiest hot chocolate afterwards... The next day, my cousin, Mia, took me to a quaint, typical english little tea-house close by to my uncle and aunt's, and it was cool to spend a little time catching up with her, after about 6 years...!

So now that we've caught up with family (and Ruth has caught up with some friends), we have started our Scandanavian tour. Really looking forward to seeing around a bit more of Copenhagen tomorrow, and then taking a tour of some of the castles around the area. Should be amazing if the weather holds up...it was raining when we flew in earlier, so hope it clears up tomorrow to take photos! We've just met some of the people on the tour; apparently, there are a few other people from New Zealand and Australia, and we were talking to two American couples over dinner who have known each other for years, and have come on the tour together (they seem really good fun, so it should be quite a trip with lots of laughs!).

There's probably lots more to mention, but it's time to turn in... ready for a full-on day tomorrow!

Conference highlights so far

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 :-)

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.

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!

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!

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!