2016 Paralympians with aniridia

Athletes with aniridia competed at the Rio 2016 Paralympic Games.

Do you know any others with aniridia who took part?

For more inspiring stories read our previous article about people with aniridia at the London 2012 and previous Paralympic Games.

Posted in Patients' tales | Tagged , | Leave a comment

Thanks to the person in front

The legs three people crossing a road, the middle one is a woman woman wearing bright blue trousersDear random pedestrian,

You never knew it but you really helped a disabled person today.
You came to be walking in front of me, in a environment that I found tricky to navigate alone with my visual impairment. Thank you!

In a bustling street or on a path facing a glaring sun or at a dark restaurant – where I couldn’t see the destination, correct route or hazards – you were a beacon. I could mimic your movements to avoid people and objects. You led me to my destination by simple virtue of it being yours too.

Your distinctive clothing played a part in why I selected you, as was your air of confidence and similar walking speed to my own. But mostly it was chance that meant I caught a glimpse of you, someone hopefully going my way.

Residual sight and any mobility aids are very useful for getting around by myself. But I often need a steer towards the right way, to be safe or allay my feeling of confusion, embarrassment or even fear. This may be for several minutes or matter of seconds. Crossing a road is a common example. It’s often in unfamiliar settings, such as finding the toilets in venue. It’s also when there are unknowns during my regular journey. For example which ticket gates to use today at the station or unexpected changes like road work diversions.

You and all the other people, that visually impaired people like me use for guidance every day can’t be thanked individually. So I want to say a collective thank you strangers, for being there. You made life easier. I hope you had a good day too.

James

Posted in Patients' tales | Tagged | 2 Comments

Travel insurance for people with aniridia

We are often asked:
”Do I need to declare aniridia when applying for travel insurance?”
This is often accompanied by outcry at an exorbitant quote when doing so. Regular travel insurance companies often charge a hefty premium to cover medical conditions.

Well the risk is that if there was any kind of accident especially one that impacts upon the person’s sight or where it might have been a factor, and the insurance company was not informed of it, they may use it as a reason not to pay out. It is of course unlikely but on that basis we’d not take out insurance at all for foreign expensive healthcare and medical transport.

So what are your options?

First consider whether you want to be covered for pre-existing medical conditions or not. Some insurers will have an option to not be covered, in exchange for a cheaper premium.

If the application form does not require you to list all the pre-existing conditions and you don’t want to be covered for then this is simple.

OJessica climbingf course this means you carry the risk of any problems with whilst on holiday. Consider riskiness of your planned activities where you’ll be.

For example If your only medication is eye drops available in chemists, you may feel you could easily replace your own supply if necessary. But you wouldn’t be covered for at least related eye treatment or repatriation. A need for specialist eye drops however could make insurance worthwhile.

If the application form does ask for all pre-existing medical conditions, then even if you don’t want cover for them, you should include aniridia to avoid the risk of invalidating the whole policy. Check its wording.

When filling in travel insurance applications online there is usually a pre-defined list of medical conditions to choose from. Aniridia will usually not be one of them. Instead, there will probably be a space to type in the name of your conditions.

If the insurance company does not already have information on aniridia they may simply refuse to cover you.
Other companies may do some research, including phoning you, before deciding whether and what price to quote.

There are insurers that specialise in covering people with medical conditions. These usually have lower rates than others. Some examples are below. Find more by searching online for ‘travel insurance for existing medical conditions

Consider that “aniridia” in some ways only refers to the absence of the iris. The symptoms and complications people with aniridia face are unique to them but are actually medical conditions in themselves.
Insurers may be unfamiliar with aniridia but may know about cataracts, glaucoma, dry eye, cornea scaring, nystagmus, etc. You may also be able to select ‘visually impaired’, ‘partially sighted’ or ‘short-sighted’ from the available options as a catch-all.
So you may feel you can encompass everything without mentioning aniridia.
Again we can’t be sure this would be sufficient if a claim were made.

Some people will take the risk and just do that online or by phone. If you want to go further:

  • Speak to insurance companies for guidance and check the wording of their policies carefully.
  • If in doubt declare aniridia as a pre-existing condition,
  • Shop around, try the specialist providers.
  • Phone the insurer instead of doing an online application so you can explain your condition and holiday plans, and argue for a lower quote.
Posted in Campaigns | Tagged , | Leave a comment

Glen’s story of aniridia and nystagmus

Glen has made marvellous videos about how his visual impairment due to aniridia and nystagmus affects him.

He’s also produced a written versions entitled ‘Life With Aniridia‘ and ‘Life With Nystagmus‘.

These are just two of many fantastic posts about disability on Glen’s blog. Thanks to him for communicating it all so well.

Check it all out and subscribe for more in future.

Posted in Patients' tales | Tagged | Leave a comment

Laura’s story of austism and aniridia

I’m Laura, I’m 26 and was born with aniridia.

My eyes get very sore, especially during the summer; I wear dark glasses and these help with the sensitivity. I take two types of eye-drops daily to keep my eye pressures in check. Later, in time, I will go blind. This fact affects me some days more than others, but I must take each day as it comes and enjoy what I can see today.

I also have autism. Having this condition affects a lot of things in my life. Meeting new people, communicating and socialising can be difficult for me, I also, at times struggle with being in a big crowd and loud noise. The severity of my conditions differs from day to day, and I must live one day at a time.

Having these conditions makes life hard for me, but there is always a way around it, it can be frustrating, but I always try and remain as positive as possible.

Five years ago, I joined a football team for people with varied disabilities. Since joining this team, my confidence has been built tremendously, because these individuals understand me and I feel that I can communicate and socialise better in their company. Before joining football, I didn’t talk to anybody; now, I have more confidence, and I even helped to coach the team (we were branded the ‘Dream Team’).

I never thought it would be possible to do something like that, but since the coaching experience, it has given me the confidence to take part in a fundraiser for a charity called Limbpower. In October, 2016, I will be attempting to run 68.4 miles in 3 days.

I hope that my story will inspire people facing tough challenges in life to fight on and to remain positive. Believe that anything is possible.

Posted in Patients' tales | Tagged | 2 Comments

School girl bakes buns in aid of friend’s aniridia

By Natasha

My daughter has aniridia. A girl at her school, not much older than Violet held a bun sale to raise money for a charity of my daughter’s choice.

The girl arranged it all by herself, made all the posters to advertise and also baked buns at home for the sale. She managed to raise £75.00 for Aniridia UK!

I feel very humbled that this girl at such a young age has such a kind heart !!

Her parents must be immensely proud of her as am I

The school is Northowram School. This girl has certainly lived up to its motto of “Inspiring Success Beyond Expectation”.

Posted in Fundraising, Parents' accounts | Tagged | Leave a comment

Mark’s 115km triathlon for ANUK

With your support Mark swam, cycled and ran 115 kilometres to raise £185 for Aniridia Network UK.

He trained for the Cleveland Steelman triathlon earlier this month. It began with a 2,000m swim around a lake. Then straight out of the water on to a bike. Next it was a 93km (58 mile) ride on undulating open roads. Lastly a 20km (13 mile) run.
Mark is a personal trainer but it was the first time he’d attempted this feat. See how hard he prepared in these photos.
He was motivated by Summer, a lovely child, who has aniridia
It all happened on  23rd July at Ellerton Water Park, Scorton, Richmond, North Yorkshire.
We all thank Mark the very best for this amazing effort and all the others involved enormously for all their related activity.
Posted in Fundraising | Tagged | Leave a comment

Call for Aniridia Network Ireland

Woman listening with a presenter and screen in the background

Eleanor listening to talks at Conference 2016

By Eleanor from Ireland

Three weeks ago I went to the Aniridia Network UK Meeting 2016 in London, it was my first time and I thoroughly enjoyed meeting people with the same eye condition as myself.

I had never before met anyone with aniridia!

I have come away feeling it would be great if such a group could meet on a yearly basis in Ireland, obviously we would have a much smaller numbers but it would be great to start up such a group or network. Peer support is so important especially for parents of young children with the eye condition group support is excellent

If there is anyone with the aniridia in Ireland, I would really very much like to talk to you and see how we could move forward in starting such a group, perhaps within the next 6 months.

I am fairly confident that we could find a suitable venue, The ANUK venue was ideal and very well lit.

I would be in no doubt that we could approach a consultant from the Eye & Ear hospital in Dublin to speak to us and I am sure we could enlist the support of associations concerned with visual impairment.

Finally, I would like to invite Aniridia Network UK to advise on how they setup their conference as I have been so impressed and really want to get such a group up and running in Ireland.

I spoke to James who is one of the ANUK Trustees. He said “We really welcome members from the Republic Of Ireland but  it has always been our goal to establish some kind of national group there. We currently have 7 household members north of the border and 12 in the south, containing people with sporadic and familial aniridia or WAGR. We would be delighted to support an event, to bring them together, in whatever way we can.”

 

Posted in Aniridia Network news, Patients' tales | Tagged , , , | 3 Comments

Gleb’s Living with aniridia video

By Gleb

 

Transcript

Hi guys. My name is Gleb and today I’m going to talk about aniridia and my life basically
So I have aniridia. For those who don’t know, what aniridia is. it is the inherited sporadic eye disease which can appear in 3 aspects. In my case the 2 main aspects are nystagmus which is the involuntary movement of the eye and glaucoma which is high pressure. I use eye drops twice a day to keep my eye pressure stable.

So talking about school. This year is very important for me because I will be taking my GCSE examinations. The next step will be going to college.
At school I always sit at the front and I usually ask the teachers to print off all the materials for the lessons so I can see it better. I sometimes use a magnifier but not often because the teachers print on A3 paper.

I go to school on my own however I don’t cross many roads.
At traffic lights, I can see pretty good such as the numbers of buses, stops and trains.

On the computer, many people argue that you need specific levels of magnification because you can’t see the text. But personally, I find that I don’t have to use magnifications here because my vision is good enough to see any words and pictures and I can work on the computer really easily.

You can read books really easily if the size of the text is visible to you and sometimes if you want to use a magnifier then do.

Now my video ends. If you have any questions please ask I will be glad to answer all of your questions.

See you next time and have a good time. Bye bye .

Tell people about your life with aniridia

We’d love to have more articles or videos like this. get in touch with your stories.

Posted in Patients' tales | Tagged | Leave a comment

Just when you thought it was all over

To list list: 1. Conference (crossed out) 2. Conference follow up 3. Everything elseYou’d think that after Saturday’s excellent conference we can all relax. Well yes one big to do list is in the bin but I’ve just written another one. Here it is:

  • Create the online feedback survey and emailed it out to all the delegates.
  • Edit the conference web pages into using the past tense.
  • Write to speakers and stallholders thanking them for coming
  • Write to all the volunteers thanking them for their efforts
  • Update contacts database with who attended
  • Pay invoices to for the tandems, VI cricket and food
  • Organise debrief session or organising team to learn lessons
  • Write up volunteering pledges and pass on to relevant team leaders for follow up
  • Publish AGM minutes once written by Sarah/Anthony
  • Remind delegates to fill in feedback survey.

And here are somethings it would be incredible if YOU could help with. Do you or anyone you know have the ability to assist with:

  • collating, crop etc and publish on Flickr the photos by the different people who took pictures
  • editing the video/audio recordings from the 2015 ad 2016 conferences
  • adding text snippets to the draft page on Storify
  • analysing and reporting on the feedback survey results
  • writing a blog post describing what a great day it was.

If not, who is going to do those things?

That’s only my post-conference related list of tasks . For me and the rest of the ANUK volunteers our basic roles continue too as well as the rest of our lives and jobs. There are no staff in our charity..

That’s why we need your help to share the task of help people be hopeful, confident, supported and well informed regarding aniridia

Oh and of course there’s starting to plan how you can make the event that you’d like to see, happen…

See all the ways you can get involved and contact us.

 

Posted in Aniridia Network news | Tagged , , | 1 Comment