Katie raises over £800 doing the Great North Run

Posted on Oct 18, 2011 by katieanuk
Katie sitting in the open boot of a car, wearing an Aniridia Network UK cap and tshirt

Katie sporting her medal for finishing the Great North Run

You may remember that recently Katie Atkinson took part in the Great North Run to raise money for Aniridia Network UK. Katie completed the half marathon race in 3 hours and 40 minutes and raised over £750 for Aniridia Network UK. With Gift Aid the total should rise to over £800. Huge thanks go to Katie and all those who sponsored her so generously. The funds will help to ensure we can hold our annual meeting in 2012 and more too.

Here Katie tells a little about her experience in taking part in Britain’s most popular race:

“I entered the ballot for a place in the race back in January 2011. The event is always oversubscribed so I wasn’t really expecting to be lucky enough to get a place. But then about a month later I heard I’d been successful.

I wasn’t very fit and I’d never run before but I was keen to raise money for Aniridia Network UK. I hoped that raising money for a good cause would help motivate me to get fit.

Katie running

Katie running during training

I began a training programme for beginners which began with short intervals of running and walking for a total of half an hour slowly increasing the amount of running every week. I have to admit I found it pretty tough and after a few repeats of running for 2 minutes and walking for 1 minute I was really struggling to keep running.

I decided I needed to build up my stamina so I started going on some brisk walks instead. Luckily Sheffield has some pretty steep hills so walking up those helped to build up my fitness combined with some longer walks in the Peak district.

In the summer I felt fitter and ready to try again with running. This time I tried the ‘Couch to 5K’ podcasts which I found on the NHS website and would highly recommend. Again they begin with short intervals of running and walking but a friendly voice on the podcast tells you when to run and when to walk which I found much easier than trying to look at my watch. The music also helped me to get into a rhythm and keep me motivated. By the time I finished the 9 week programme I could jog continuously for 30 minutes, something I would have never thought I could do before.

The Great North Run is a half marathon (13.10 miles) so I knew I wouldn’t be able to run the whole route but I planned to run for 30 minutes and then walk for 10-15 minutes before running again and keep repeating this trying to run as much as possible. I wasn’t sure if I’d ever even walked 13 miles in one go so I would be pretty pleased to have even just walked the whole way round.

We got up early on the morning of the race and had a good breakfast. My brother was also taking part for another charity and my parents were coming to support us. We drove to South Shields where the race ends and then my brother and I caught the Metro into Newcastle where the race starts.

When we arrived at the start line we were already a little late so we had to run to get our bags on the buses which would take them to the finish for us. There were huge crowds, in total over 50,000 people were taking part. The queues for the toilets were massive and I was still waiting when the warm up started but the atmosphere was very jovial and all had fun doing the warm up while we waited. Being partially sighted I was worried about finding my way around the start area. We had to start in groups depending on how fast we thought we would complete the race and my brother was in a different group from me but the groups were colour coded so I just followed the other people with pink race numbers like me. My group was right at the back so it took us 25 minutes just to walk forward to the start line after the race started!

Once we got going it was great. There were lots of people overtaking me, I guess some of them must have arrived late and should have been starting ahead of me. I tried not to fall into the trap of running too fast at the start, I didn’t want to tire myself out and I stuck to my plan. The race started on part of the motorway which had been closed for the event. It was strange running down a road we’d never normally be allowed on. Once we started to approach the Tyne Bridge lots of crowds began to line the route and cheer us on. My parents were somewhere up on the flyover just before the bridge but  with such huge crowds I couldn’t see them and they couldn’t see me!

Going over the Tyne Bridge was great, that’s the iconic picture I always remember from watching the event on TV. Not long after the bridge I reached the 2 mile mark so I slowed down to walk for a few minutes before starting to run again. The weather was quite warm and sunny when we started but then during mile five dark clouds appeared and it began to rain heavily. I ran most of that mile because I thought if it carried on raining like that I wanted to get around the course as soon as possible. I ran most of the first half of the race, probably doing 4 -5 mile in total then it started to become harder to run, luckily the weather had started to brighten up again. The 11th mile was the most difficult, I was really starting to ache by then, although strangely I ached less running than walking. Once I reached the final mile and turned the corner onto the seafront I really began to enjoy it again knowing I was nearly there. I made it to the finish line in 3 hours and 40 minutes.

The local people who came out and cheered us on even in the rain were brilliant. Even after three hours of watching people run past they were still there. The race organisers provided water on the route but some locals had brought refreshments to give out including sweets, sausage rolls and slices of orange. This really helped to keep everyone going on the last few miles. Crossing the finish line was a big relief and I was glad when I could finally sit down but I also felt very elated and was already thinking about doing it again next year, hopefully in under 3 hours next time. I did ache the next day but not as much as I thought I might and I was lucky to avoid any blisters. Despite all the hard work involved it was a really enjoyable experience and I’m pleased I managed to raise so much money. I hope I can do it again next year and raise even more!”

Aniridia Network UK relies on fundraising to be able to do its work. Please help us by giving what you can online. Alternatively what could you do to raise money for our charitable cause. Contact us if you have or want ideas for fundraising.

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Aniridia Network UK is founding member of new Aniridia Europe organisation

Posted on Oct 3, 2011 by Aniridia Network

Aniridia Network UK are very pleased to announce the creation of Aniridia Europe, a federation of aniridia patient associations, support groups and individuals from across Europe.

We have been collaborating with colleagues from across Europe for the past few years. With a lot of hard work from everyone involved, particularly Rosa from Spain and Neven from Sweden we now have an official organisation which covers the whole of Europe.

The aim of Aniridia Europe is to allow patients and doctors from across Europe to share their knowledge and experiences and to help new aniridia patient groups grow in countries which don’t currently have a support network.

Aniridia Network UK are very proud to be a part of Aniridia Europe. We have joined as a full member and will contribute to the growth and development of the organization. Katie Atkinson,  Chairperson of Aniridia Network UK has been elected to the Board of Directors of Aniridia Europe. We hope our members will see the benefits of being part of a European wide initiative.

We are already very excited about the forthcoming medical conference of aniridia being organized by Aniridia Norway which will take place in Oslo in June 2012. This will bring together researchers from across Europe interested in all aspects of aniridia allowing greater collaboration, reduce duplication of work and speed up the pace of research – benefiting everyone.

Aniridia Europe

Aniridia Europe was formally established on September 25th 2011 and has its seat in Norway.

The European Federation of Aniridia Associations – Aniridia Europe – promotes research, exchange of knowledge on aniridia and empowers patients with aniridia throughout Europe. More information is available on www.aniridia.eu.

“With the development of this Federation, we are removing barriers both physical and of knowledge, we are expanding our the scope of our activities, creating links between European health professionals and patients, as well as raising awareness on our rare condition”, says Rosa Sanchez Vega, the new President of Aniridia Europe.

Aniridia is a rare congenital eye disease, which implies lack of an iris. Several associated conditions, such as for example cataracts, glaucoma and cornea clouding, often cause severe low vision among those who are affected. Other organs of the body are also sporadically affected, as in WAGR syndrome where Aniridia appears together with Wilms tumour, Genitourinary problems and mental Retardation.

This European Federation helps to pool knowledge, to exchange experiences on this condition and to provide support both among doctors and patients, by trying to reduce the duplication of efforts and unnecessary tests, to accelerate processes, based on evidence, and to optimize resources, in short, to improve care and daily life for people living with aniridia.

“Aniridia Europe was founded by representatives of sixteen European countries including eight national aniridia associations from Norway, Sweden, France, United Kingdom, Italy, Spain, Germany and Finland. In addition we have aniridia networks and contact persons in several other European countries and in the future we envisage aniridia associations throughout the whole of Europe”, says Neven Milivojevic Vice-President of the Federation.

One of Aniridia Europe’s objectives is to have a scientific committee, in which different expert doctors and researchers on aniridia from each member country participate. This will facilitate the development of European research projects and European conferences on this rare condition. The First European Conference on aniridia is organized in Oslo, Norway 8-10th of June, 2012.

For more information, please contact:

Ms. Rosa Sánchez de Vega
President
rosa.sanchez@aniridia.eu
Phone: +34 646718142

Neven Milivojevic
Vice President
neven.milivojevic@aniridia.eu
Phone: +46 706390068

Posted in Aniridia Network news | 1 Comment

RNIB Phone Watch

Posted on Sep 5, 2011 by James

I’ve always had a bit of a quandry with my mobile phone. I don’t really need to use a screen reader with but struggle just enough to discourage me from using the internet on it. So I’ve never gotten a tarrif that allows heavy internet use – which in a turn also limits my usage!

With an idea to change this I went to the RNIB’s recent Phone Watch event. It was billed as “short overview talks of the different mobile phone choices available for blind and partially sighted users and giving you the chance to get hands on with the latest handsets”.

Since graduating from a normal to a smart phone I’ve always stuck with Windows Mobile operating systems. Considering that parameter, when getting my current model I chose it largely on the screen size and the easy to read ‘TouchWiz’ reskin that Samsung had done to the normal interface. It certainly helped.

But compared to iphone and Anroid devices there are very few useful apps for Windows phones. It is a trend that may or may not start changing with the coming of Windows Mobile 7, plus Nokia’s takeover by Microsoft and hence swtich to Windows 7.

So I thought I’d go to Phone Watch to see what accessibilty features the alternatives have and whether I’d find them useful. This is my write up of my notes.

I arrived late, near the end of talk about apps for iphones. Twitalator and Tweetlist were said to provide large fonts or screenreader access for twitter. Big Names shows contact in large print. iloupe uses the camera to give 8x magnification but doesn’t give the help of the flashlight, which is possible more expensive apps. Generally Apple products are regarded as relatively accessible once out of the box and the feature is switched on.

Personally I don’t want to get caught up in the Apple trap. So I was more interested in the next section about Android phones. First was the news that Android has only had accessibility features appear since version 1.6. Lower end phones can also be sluggish when using them too.
There is 3rd party software called Mobile Accessiblity (requires Android 2.1) which provides a suite of screenreader friendly versions of 10 standard features such as contacts and web browser. Talkback, the built in screenreaders isn’t useful for purely touchscreen devices – it needs a trackball/dpad to move around. Most disappointing for me was learning that there are no means of enlarging or magnifying the text on screen, only apps for specific features. Indeed I was stunned later during the hands-on session to find no font size options at all.
The general feeling seemed to be was that with but limited to the features Mobile Accessibility provides Android might be considered better than the iphone for screanreader users. But for non-screenreader users iphone is currently much superior.

Finally talk turned to Blackberry devices. There is a free theme called Clarity which rearranges the interface to make it large print and high contrast. I was very impressed when I tried this later. There is a numerical screenreader but it is only available in the US. There are hopes that a new one will be coming to Europe soon.

As mentioned the evening ended with a chance to play with the various phones plus and ipad and a Kindle which was really useful. The facilitators were very knowledgeable, answering lots of questions. I’m very grateful for them running the event. For details about future events, the App Of The Month posts and more read the the RNIB’s TechKnowMore blog or follow them on Twitter.

Two of the other people there have set up a site called blindtechsupport.net. They make podcasts reviewing the latest accessiblity (features of) apps. They also have Facebook/Twitter profiles.

As for me, I’ll stick with what I have for the moment. But when it eventually gets lost/stoken/broken I’ll have a better idea of the variable state of play and where to find out the latest.

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Katie’s introduction

Posted on Aug 23, 2011 by katieanuk

A picture of Katie Atkinson, chairperson of ANUKI was born in 1983 with sporadic aniridia and also have nystagmus, cataracts, glaucoma and aniridic keratopathy. I am registered partially sighted.

I live in Sheffield with my partner. My hobbies include ice skating, walking and reading.listening to audio books. I am/was studying for a PhD in physics/electrical and electronic engineering at the University of Sheffield.

I’ve been Chairperson of Aniridia Network for many years now.

Posted in Patients' tales | Tagged | 2 Comments

Capsular Tension Rings and Aniridia Rings in Pediatric Cataract surgery: A Case Series

Posted on Aug 15, 2011 by Aniridia Network

Here are some slides detailing a medical study into the success of implants for aniridia patients.

Vodpod videos no longer available.

Credit: The original slideshow and transcript

We also recently came across a page showing the various implants made by Morcher available for people with aniridia.

Finally Here are result of another study not involving aniridia but which finds:  reasonable results with glued implants in pediatric eyes

Have you had implant?
Would you like to have one?

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Andrew’s Central Auditory Processing Disorder

Posted on Jul 30, 2011 by Aniridia Network

Man indoors sitting with sunglasses on

I was born with congenital aniridia (sporadic) and nystagmus. At school I struggled and was regarded as being dyslexic. Then after leaving school and going to college I was told that I was not dyslexic.
I could not understand why this was, but I have always regarded my situation, more as a challenge than a problem. So I just carried on as normal.

But when I went to a different collage, I was told that I was not dyslexic, but I had dyslexic tendencies and I did not hear words properly. I found this confusing, but just ignored it and carried on.

After years of living with my condition and never meeting any one with my condition, I decided to go to the Aniridia Network UK 2011 Annual General Meeting, more as a social event than anything.

One of the guest speakers was Doris-Eva Bamiou. Who gave a talk on CAPD (Central Audible Processing Disorder). As I listened to the talk, I found myself ticking boxes. I started to think that she could have been talking about me. So after the talk, I got the chance to talk to her personally. After a short talk she said that it sounded like I had CAPD, but I would have to contact my GP and get a referral.

So when I get home I contacted my GP as soon as I could. My GP referred me and within a month I was diagnosed as having CAPD.

The more that I think about it now, the more that things in my life make scenes. I have always struggled to communicate and take things in when I am in a noise environment. Thinking about it most of my problems at school and college, that I had put down to my sight or dyslexia, are in fact CAPD.

I wasn’t sure what could be done as I am 41 now. But I had an appointment at the hospital at the beginning of July.

It went ok. We talked about my condition and that as my brain is fully developed – there is nothing that can be done to correct it. But there are techniques that i can use to limit the condition:

  • manly avoiding conversations in noisy places
  • asking people to speak directly to me face to face, not at the side so that I can see their face and apparently lip reading helps.
  • also trying to have discussions in rooms that have carpet, soft furnishings and curtains helps.

By Andrew

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Protected: Mary’s annual mobility training

Posted on Jul 18, 2011 by Aniridia Network

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Thoughts on the Special Educational Needs & Disability Green paper

Posted on Jun 26, 2011 by Laura

I (Laura) recently attended parent consultation meetings run by NBCS/RNIB on the Government’s reform proposals in the Special Educational Needs & Disability (SEND) Green paper.

It leaves a lot to be desired!! I have to stress that this is not definitely going to become law, and much of the conclusions drawn from it are based on supposition on the part of concerned groups rather than hard fact. Let’s just hope the government does one of it’s now famous ‘u-turns’ on this subject!!

RNIB/NBCS wrote to lots of parents inviting us to a consultation afternoon regarding the SEND Green Paper. One of the big concerns relating to visually impaired (VI) children is that under the paper’s proposals, School Action and School Action Plus will be abolished. Only children who currently have statements will be assessed for help under a whole new plan which will encompass health, education, and social welfare of disabled children. There is also a clause which states that all school’s staff should have the expertise to deal with any disability, which puts qualified teachers of the visually impaired (QTVI) at risk, and an unrealistic burden on school staff to be able to expertly teach children with all disabilities. The RNIB feel this is not well thought out. After all, QTVIs have a 2 year course on top of their teacher training just in teaching VI children. Are the Government suggesting that every teacher becomes proficient in Braille and British Sign Language?

Certain areas of the country – like Leeds and Sheffield –do not statement partially sighted and blind children unless they have additional disabilities. This would leave most children with aniridia liable to fall through the cracks in the new system. Only those with statements will get the new ‘personal budgets’ – the rest will have to rely on adaptation made by the school, with no extra money.

Parents are also going to be given more ‘power’ through the new personal budgets. The way it would work, is that each child would be allocated a budget every year. Parents would be responsible for spending it any way they see fit. It would involve not only hours and hours of work, (and possibly a degree in accountancy!), but parents would have to find services themselves. For example, currently, children with disabilities not attending their local school, get free taxis to school. Under the new system, there is a suggestion that parents might have to:

  • ring round taxi companies to find the cheapest deal
  • pay the bills themselves
  • and keep receipts, to claim the money back.

Extend this to every single aspect of your child’s care, and parents would have a practically full time job just making arrangements and doing the paperwork. Also, if your budget runs out, (if, for example, your child needs an expensive piece of equipment such as CCTV),  and there is no money left to pay your child’s teaching assistant? Parents were very concerned that they would have to make almost impossible choices like this.

The one group of young people likely to benefit from the new proposals are the 16-25 age group, who are hardly catered for at all under current arrangements. The paper made proposals that go right through from birth to 25, with budgeting for tertiary education, etc.

Basically, although the Green Paper itself is extremely vague, it seemed to bring up far more worries than it solved. RNIB/NBCS wanted to form an official response to the Green Paper. Parents had a lot to say, as you can imagine!! Speaking to parents of children with other disabilities (not as part of this meeting, but personal acquaintances from elsewhere) showed that other charities are very unhappy too. The RNID and a charity for autistic children have their concerns, and may well be sending formal responses too.

The RNIB have published their draf their response to the paper. It highlights a lot of the worries expressed by parents/teachers at the meeting. Also at the link above you can use their template as the basis for submitting your own response to the SEND Green paper – the deadline in 30 June 2011.

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Returning to Moorfields for testing time

Posted on Jun 25, 2011 by James

I just went for an appointment at Moorfields Eye Hospital for the first time in 15 years.

When I became an adult and left London for university, Moorfields said I didn’t need to keep coming to them. Instead I could just go to normal opticians to check my pressures each year. Since my sight has always been stable that’s been fine.

But I got a referral from my GP to get genetic testing. My medical notes contain no detailed results of the genetic testing that was done on me as a child in 1980. In fact there’s a stark inaccuracy that ‘perhaps 40% of any children would have aniridia’. We now know it’s 50%. Genetics has of course come a very long way since then so I felt it was time to understand my particular case better. Plus if I get a PAX6 mutation confirmed, I can go to the USA to take part in the NIH study – a good basis for a holiday!

So at 8:30am I was first in the waiting area. First a nurse did an initial sight test, checked blood sugar and pressure.

After a short wait a doctor performed the usual eye examinations, checked pressures, peripheral vision and took a complete family history. He also tested me for colour blindness, The spotty numbers were very difficult to see but he didn’t remark on it later.

Image of James's retina (taken 2003)

Next was a trip to the Laser Suite. A gadget shone lots of coloured wavey lines in to my eyes to map my retina. There was a very bright square too which was very uncomfortable and made my eyes water. The person doing it remarked that it would have been better if they hadn’t just put drops in my eyes!

Then it was back to the doctor and his consultant to review. They were very nice and were happy to organise genetic testing. In additon they said from now on I could have annual checks at Moorfields instead of at opticians. I’m very glad about that as I’ll be seen by more experienced people with better equipment and build up a consistent case history.

They sent me to have a photo taken. This was the worst bit of the day for someone with photophobia. The camera was really close and then a massive flash went off! Three times in each eye! That was horrible. I had a headache now from all the brightness and handling.

Next a genetic counsellor explained the testing consent form to me so I could sign it. Then I went up stairs for a blood sample to be taken. The results will take between two and six months to come back.

I left at 11:45 having signed with trepidation up for more at the same time next year!

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