1st European Conference on Aniridia: Day 1

The hotel’s breakfast buffet was certainly broad but not quite enough to include staple English breakfast elements such as bacon and hash browns or fried bread. It was sautéed potatoes and mini sausages instead.

After breakfast I took a walk In beautiful sunshine to explore Oslo. The royal palace park was lovely, very well cared for. The palace itself was covered in scaffolding though.

Next, dodging the trams, I made my way down to Aker Brygge – the docks on Oslo Fijord. It’s a popular area with shopping, apartments, offices, restaurants and bars. Ferries numbered like buses leave for the islands from here.

Back at the hotel I met up with Katie and the conference began. Professor Moore gave a useful introductory talk. There was some jargon that I struggled with. “Phenotype” eventually became clear as meaning typical symptoms. Other terms I had to Google to find explanations for.

Dr Gottlob then presented some fascinating graphs showing nystagmus eye movements and the differences between these movements in patients with PAX6 mutations (aniridia), albinism and foveal hypoplasia alone. In those with aniridia it was found to often have large amplitude and vertical pendulous motion. We also saw imagery showing how the fovea cup is a lot shallower or entirely absent. There may be a causal relationship with nystagmus here.

Next Dr Ulla Edén presented a talk on “Epidemiology and 8 years follow-up study of Scandinavian aniridia patients”. One of key findings was that in the Swedish population under 20 years old the incidence of sporadic and familial aniridia was found to be around 1 in 47,000. That makes aniridia twice as common or half as rare as older sources stated. They don’t believe the number of people with aniridia is increasing, rather that diagnosis is getting better so patients that would previously have been missed are now being identified thanks to more robust health care practices.

Jill Nerby founder and director of AFI then took to the stage to talk about all aspects of living with aniridia. She used quotes from the book about aniridia that she jointly authored.

The infrequently occurring Aniridic Fibrosis Syndrome was discussed by Dr Chris Riemann, Aniridia itself makes this difficult to diagnose early enough for effective treatment. As well as scans he advocated use of an endoscope for examination & surgery.

The last speakers focused on the brain. Dr Yogarajah talked about the smaller effects PAX6 can have on brain development. A recorded presentation by Dr Bamiou about PAX6 and Auditory Processing Disorder was then played. Afterwards Dr Bamiou answered question live via Skype.

A question and answer session with a panel of all the presenters ended the day.

After a quick snooze back in my room I returned for dinner and chatting with other delegates. I took part in a meeting of the Aniridia Europe website editorial team. I offered to help review the content to ensure it is in plain English has good usability.

Finally Katie and I went up to the sky bar for drinks and discussion about current Aniridia Network UK issues.

Use the links at the top or bottom of this article to read about the other days at the conference.

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1st European Conference on Aniridia: Arrival

I like visiting other cities and I decided it was time to get a more international angle and more medical knowledge on aniridia. So I’ve come to the 1st European Aniridia Conference in Oslo.

This evening I left work and went to Gatwick. Before long I was enjoying the novelty of free wifi at 10,000ft over the North Sea courtesy of budget airline Norwegian.

All the wood in Oslo airport was beautiful. Even the high speed train into the centre had wooden armrests, panelling and luggage racks. It all has that sense of Scandinavian quiet natural expectation and realisation of quality.

As I’m only here for three nights I thought I should get a immediate sense of the city. So I decided to be brave and walk from the station to the hotel. Anywhere unfamiliar at quarter past midnight is going to feel a bit unsettling. But I could see it was a nice clean city with plenty of life.

I found the hotel and was delighted to hear that the bar was still open. So here I am enjoying a beer in the 21st floor sky bar, looking out at the pretty lights of the city. I wonder if any of those around me are here for conference too? I put that question on Twitter and Facebook but no response. Still it gives me a chance to write this blog post.

The conference kicks of tomorrow at 12:30. It’s mainly doctors and researchers presenting to each other. I hope it won’t be too jargon filled as to be unintelligible to a non-doctor. There’s free wifi here too. So keep an eye on Facebook and Twitter for live updates.

I’m also looking forward to putting faces to the many names in the world of aniridia. People like Jill and Rosa plus Dr Lauderdale and Professors Moore and van Heyningen. Aniridia Network UK Chair Katie is here too, largely in her Aniridia Europe board member capacity. I’ll be interested in hearing how that organisation is shaping up from all those involved.

I hope to find some time for sightseeing while I’m here as well. While I don’t expect the conference to be a dead parrot, I am in the Norwegian Radisson Blu and am pining for the fijords!

Use the links at the top or bottom of this article to read about the other days at the conference.

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Edinburgh guide dog training: Day 14

Today has been the best day out of the whole of the training. It’s been one of those days where I feel like I am just walking along not having to concentrate too much and getting great work from Annie.

This morning I got to meet Annie’s puppy walkers. They are the people that socialise the puppy for the first year of its life before it goes off into training. They explained that one of the first things they do with their pups is take them to the brass band practice to get them used to the noise. It obviously worked for Annie after her star performance at Rock Choir last Wednesday. We chatted for a while and they gave me a CD of puppy photos which I can’t wait to put on the iPad so I can have a close look.

Then we went out for a walk so they could see her move in harness. It was a walk we have done lots and I was quite proud of myself for knowing where to turn and not needing prompting with the turns.

At one point we were sat for a while waiting for cars to pass before crossing the road and she clocked the family were watching but she continued to work. When I told her ‘Forward!’ she came to some parked cars and then took me to the right and round the cars back on to the kerb. She was really confident about it and I was very proud of her.

Then a bit further up the road there was some roadworks and she found the way round them by doing an off kerb obstacle. She was quite focused for the majority of the walk and was listening to me.

Once we had finished she realised that the family were definitely there and she got very excited. She didn’t know who to say hello to first. It was a great opportunity to say thank you for all their hard work. It must be hard getting them as a puppy and putting in all that hard work to give them up after a year. I will definitely be keeping in touch with them to let them know how Annie is getting on. I am still in touch with Sandie and Connie’s puppy walkers.

This afternoon we went into the city centre so I could change the dress I bought on Sunday afternoon. The place was packed out because of the bank holiday but Annie was very cautious and kept her speed down. We were weaving in and out of people and we only got brushed a couple of times. She was forced into a shop doorway by someone who wasn’t looking where they were going and kept going left and all Annie could do was follow her otherwise the lady would have tripped up. I enjoyed walking along feeling Annie’s movements, she really seemed to find the challenge very rewarding.

Tomorrow is our last day of work before we go home to learn the routes there. Two weeks has gone really fast.

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Edinburgh guide dog training: Days 11, 12 and 13

Firstly I would like to apologise for the lack of updates. I have had my husband Graham up visiting for a few days and I have also not felt 100%. As well as having aniridia I have bipolar disorder and despite being fairly stable on medication it sometimes comes back and bites me on the bum. I think it has just been the change of routine and feeling so many different emotions over the last few weeks and months.

We were at dinner a few nights ago and I found out that one of the other people on class also has aniridia! You know the usual conversation ‘How many dogs have you had? What were they called? What’s your eye condition?’. It’s not often you meet someone else with the same condition. I reckon it’s the luck of having two of us together making the weather so nice.

On Saturday morning we did a different route which had pedestrian crossings and a high street where we needed to be slower and more cautious and a stretch where we could go a full pace and stretch our legs. I got Annie a pink portable bowl, some pet wet wipes and dog bags from B&M Bargains and got my latte fix.

In the afternoon and this afternoon we did traffic training. This is where a member of guide dog staff drives their car towards you and you tell the dog to ‘Forward’ and either praise them if they remain firmly on the kerb or tell them ‘No!’ if they try to move. There are two types of traffic, near and far. Near traffic is where the car comes from your right directly in front of you. This kind of traffic we can practice ourselves with the dog. When we practice with real cars we don’t do the hand signal or we would give the driver a heart attack! Annie was far more cautious than the first time we did this a few days ago. Her bum stayed firmly on the kerb even when I was encouraging her to cross. I was very pleased that it had sunk in that she had to stay on the kerb and not play chicken with the car.

On Sunday morning we free ran the dogs, my trainer managed to get a brilliant photo and just before two of the dogs ran into his legs nearly knocking him over! It was lovely free running all four dogs together and they certainly kept up the chase well.

6 adults with 4 guide dogs just let of their leads and running towards the camera

In the afternoon we left Annie sleeping and Graham and I went into the city centre for a couple of hours.

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Edinburgh guide dog training: Day 10

This morning we did some obedience and food refusal with the dogs.  Annie was great doing her obedience. She did take a look at the chocolate biscuits on the floor but I gave her a flick on the lead and then apparently she looked like she was saying ‘Oh I can’t possibly look.  Oh it’s just all too tempting.  Don’t look!’.

After the biscuits were removed from the floor we did recall and the other trainer tried to distract her while I was calling her back.  She did think about going over but she came right back.

Beth Annie and scaffoldingBefore lunch we had a very eventful walk. We walked from the hotel to the shop to put on the lottery for the EuroMillions.  On our way back to the hotel I crossed over the road and we came across and obstacle. Annie stopped and sat to indicate and I instructed her to ‘Find the way’. She attempted to take me past and I walked into the scaffolding (I found out later there was a man on it at the time).  There was no way around the obstacle without going into the middle of a main road which I wasn’t going to attempt. The man who was on the scaffolding gave me his arm and guided me through.

We started picking up the pace a bit and then came across another obstacle.  This time I realised it was the same thing again and dropped the handle and accepted help.  It’s very unlike me as I’m usually very stubborn.  I once spent 30 minutes in the fruit and veg section of Tesco’s looking for an onion because I didn’t want to ask for help.

Boarders

We continued on our way up towards the hotel and my trainer said that we would stop at the boarder’s house. Volunteer boarders have the dogs while they are in advanced training. They have them in the evenings and at weekends and give up their time to look after our wonderful dogs. It was so nice to be able to stop by and speak to Jill and say thank you for looking after my little Annie. I was rather amused that their cat loves dogs and Annie loves Flix and was licking his face to say hello. Annie was really excited to see the family who have been looking after her for the past 12 weeks. So thank you Jill and family I really appreciate it 🙂

Beth Jill & Flix

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Edinburgh guide dog training: Day 9

Today we met the District Client Representative (DCR) for the Edinburgh guide dog team.  His guide dog is the brother of Magic the Blue Peter puppy.  We had a good chat about his role and the role of our representative in the north east.  The DCRs are there if a guide dog owner (GDO) has any difficulties and they can signpost them or take up issues on their behalf.

We also had a good chat about technology and I got to have a look at his Kapten which is a GPS device for VI people.  The other GPS device is a Trekker Breeze. I think we are planning to compare the two in a session next week.  I am quite interested for when Graham, my husband, and I go to new places. He has no sense of direction and I find trying to use Google maps and work a dog difficult.

In the afternoon we took the train to Waverley and walked around the city centre which was much busier. Annie walked me in to someone and  I flicked her harness and told her to pay attention and she was more cautious after that.  She was fab on the train and just laid down.  I even managed a sneaky take-away latte on the return journey.

Free running

I was so caught up talking about Rock Choir on Wednesday I forgot to mention free running.  A free run is where the dogs get a chance to be a dog, play, sniff, chase and sometimes roll in horrible stuff.  We have done two free runs so far.

The first was on Wednesday with another dog Commando.  Commando’s owner is blogging on the Guide Dogs website and I will post the link when it goes live.

We first had to get the dogs to walk nicely on the lead up to the field and then we did some obedience before we let them off.  When they were given the command ‘Go and play!’  Commando and Annie started to play chase.  Annie is very fast and kept over taking him but Commando kept giving it his all.  He then decided that the quite fancied the golden retriever which was also running in the field and decided to go after her.  The dogs have bells on when they free run and it is lovely to hear the tinkling and the thud, thud, thud of their feet and the sound of the grass moving.

Today we took Annie to the beach and she had a free run.  I found that she can dig deep holes very quickly.  There was a man with a remote control plane and Annie was following it round and round.  She was brilliant at her recall and once I poured half the beach out of my shoes we came back to the hotel.

Tactile paving

Beth Annie and tactile paving

Tactile paving is very useful for visually impaired people. At the moment I am doing unfamiliar routes during training and therefore I have to feel the tactile paving to know there is a crossing. Once I have felt the bobbles I can start saying to Annie ‘Find the crossing’ if it looks like she is going to overshoot it.  It also gives me an awareness that we are approaching a kerb and I can encourage her.  Apart from familiar landmarks the only other thing that can indicate there is a kerb coming up is the end of the building line where the light changes from darker to brighter.  Some of the tactile paving in Newcastle is metal bobbles and I find these can be quite treacherous in winter when it is icy or when we have had wet weather.

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Edinburgh guide dog training: Day 8

Annie rocks at Rock Choir

I am a member of Rock Choir in Newcastle. There are Rock Choirs right across the UK. We sing rock, pop, Motown and gospel. I just love the atmosphere and the buzz of singing in a very unique, feel good choir.

When I knew I would be up in Edinburgh for just over 2 weeks I asked my leader Rob if he could ask Elaine, leader of the Edinburgh choirs, if I could go along. I wanted to see how Annie coped, with support from my trainer. Elaine kindly agreed to let us come along which is how we ended up at Rock Choir in Edinburgh last night.

Annie at Rock ChoirWhen we arrived I settled Annie down at the side of my chair and got chatting to some of the lovely ladies in the soprano section. We warmed up and then practiced ‘When you’re gone.’ All the choirs are practicing it for a world record attempt at the end of June.

Not only do we sing we also dance – or in my case attempt to dance. My two left feet get very mixed up. Apparently at first Annie was looking around at everyone probably thinking ‘I’m sure someone is going to stand on me soon. My mum already does that in the room when she is walking around let alone when she’s doing those funny moves.’ and then she went to sleep! For the first song all she did was chill out. Truly amazing given that we have only been together a week.

I listened to some of the songs which we haven’t done and one of them was ‘Where you lead I will follow’. If you listen to the words of the first verse I think they are very apt for a guide dog partnership. Here’s the youtube video of Rock Choir singing it at Wembley.

Interestingly when I was sat and other people were stood up dancing she was more interested than when I was up busting some moves.

The last song we practiced was ‘Oh Happy Day’. As I was singing Annie looked up at me and wagged her tail. My heart melted with love and pride at how well she had done. She’s obviously a girl who knows her taste in music.

After the rehearsal I gave her lots of fuss and we had some people come up and introduce themselves. They gave her a little fuss which I think she more than deserved after being such a superstar.

We are hoping to go back again next week before we head back down to Newcastle.

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Edinburgh guide dog training: Day 7

Today was much cooler so we headed of into the city centre on the bus to walk in some of the busier areas and also to feed my latte addiction. I had to settle for Costa rather than Starbucks but it was my first latte for a few days so I wasn’t complaining. Once I had drunk my bucket sized latte we headed down the main shopping street and then out of town.

Beth and Annie striding along with Arthur's Seat and Scottish Parliament in the background

It was a nice long stretch going past the Arthur’s Seat and the Scottish Parliament and then into a more suburban areas. It was a good chance for Annie and I to stretch our paws/legs and really stride out over a longer distance. I had been having cabin fever from being stuck in the hotel and from the weeks that I have been walking slowly with a cane. It felt amazing just to be out there in the fresh air just gliding along because of the big stretches of open pavements. As much as I enjoy being in busy environments I think I enjoy really striding out even more. We were out for 2 and a half hours and we caught the bus for the last stretch to the hotel.

When we got off the bus Annie was still raring to go and I had to tell her to ‘steady’. It is definitely making me want to try walking from my work to home with Annie now I know the route. It is roughly 5 miles but there are 2 metro stops on the way.

In the afternoon we went to Asda to do some right sholder work and to Pets at Home to take back the tug toy which broke in under 48 hours. In Asda we did lots of turns left and right, it is a huge Asda so there was plenty of aisles to work up and down. I did well following Annie but I keep having to remember to slow down to a pace where I am not going to injure myself or other people because I am walking too fast for the environment we are in. It has always been a challenge for me to slow down in lots of things I do in my life.

After each walk I have been trying to get Annie to shake by rubbing her fur and patting her. My GDMI has been giving me a bit of time then 3 seconds for her to shake before he has a go. I haven’t managed it for the last couple of days but he has. I reckon it is all the hard work I put in before, just like when you can’t open a jar and someone else does it first time. He tried the technique on me but I didn’t shake either – LOL

Pets at Home changed Annie’s toy with no questions asked. The toy had two ropes which had been glued together and come apart when we were playing tug. We picked out a similar toy from the same range so we will see how long that lasts.

An update on the cheesecake situation was that we finally managed to eat the ginger and white chocolate after reserving one each when we ordered our main course but after that they only had two left. We wait with baited breath to find out what the next cheesecake of the day is.

Beth sitting on wall with Annie at her feet

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Edinburgh guide dog training: Day 6

Day 6 started with visitors.  One of the other people on class had a chance meeting with a gentleman staying in the hotel who was doing the marathon to raise money for Guide Dogs. We agreed that it would be good for him to meet us and our dogs so we asked him to pop down to the student lounge.  It turns out he had run 4 marathons this week and had done lots of fundraising for Guide Dogs.  He had a chat to us all and had his photo taken with us and our dogs to put up on his fundraising page.  It’s really nice to be able to say thank you to the people who raise lots of money and I am sure it was nice for him to see where the money he raises goes.

After that Paula the manager for the north came to watch us working and say hello. The others hadn’t met Paula but I had already as she qualified Connie and I. She worked with us on Northumberland Street and she also came out to withdraw Connie and do the paperwork to put me back on the list.  We did the walk in the opposite direction to what we had done previously.  Annie was quite distracted by dogs, the beach and the park.  There was also one point where she indicated the kerb and I thought she needed a busy but it was actually a bin that was in the way.  She worked well and I feel that I am getting better at giving her corrections.  It feels a bit wierd after not doing them for so long because Connie was very sensitive and hated being told off.  I also think that my turns feel a bit more natural than they were doing.  There is still a lot to remember and work on.

In the afternoon we did a short walk from the hotel with some off kerb obstacles.  She was much less distracted and did well at indicating except for one obstacle that she tried to go under.  We also did some obedience on the grass practicing her sit and wait, then down and stay, and also bringing her to heal by my side.  I think I need to practice a bit because I am so out of practice.

Before tea I went to the gym (I am training for a 10km run at the end of July) and then I practiced my Rock Choir songs.  Annie didn’t even move and was fast asleep throughout so I think she will be fine on Wednesday when we go to practice.  At tea we have had a running joke about the cheesecake of the day which has been apple since we arrived.  Today the cheesecake was ginger and white chocolate, we all ordered the cheesecake and waited with anticipation only to be told it had sold out.  I can’t wait to see what the cheesecake of the day is tonight.

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Sarah’s introduction

Sarah successfully stood for election to be an Aniridia Network UK trustee in 2012/13. She couldn’t be at the annual general meeting in person. This is the nomination statement she provided instead.

I have aniridia. Over the years I have benefited from the support group by sharing experiences and information with other members of Aniridia Network UK.

In this spirit I feel it is time for me to ‘give something back’ – by being a trustee. I believe that I can fulfil the role because I am organised and have previously acted as secretary to a parochial church council. Also for some time I have worked with members of trustee bodies as part of my job. I have worked as a communications consultant and believe that the skills I gained through that role would benefit Aniridia Network UK.

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