Al’s sight loss and depression journey

 

AlHi, I’m Al, I’m 28 and I’m from South Wales. I have been registered as severely sight impaired (blind) since birth due to aniridia and nystagmus, caused by a rare missing gene that resulted in a condition called WAGR syndrome.

At the age of 15 months, I was diagnosed with a Wilms tumor, which is a form of kidney cancer. I managed to beat that battle at the age of 3 years old, but my sight battle had barely begun.

As a child my vision was very limited. However I could walk the streets, read books/papers/magazines, see people’s faces. With the use of aids such as magnifiers I lived a fairly normal childhood, with the exception of having a support teacher on hand. I was confident, and I was full of life.

At the age of about 11, cataracts started to form in both of my eyes. My vision started to become more blurry, but still I could do the things I had always done. About a year later the cataracts were both removed within about 6 weeks of each other and for the next 2-3 years I actually felt like my sight was the best it had ever seemed, though far from perfect vision of course.

When I was 14 I started to develop glaucoma in both eyes. With the help of numerous eye drops and surgeries to control the eye pressures by inserting shunts in to the back of my eyes, I managed to go on for some time without further major loss of sight.

At 17 years old I left school and by the time I was 18 I started to notice that my sight was getting even worse due to the glaucoma. By the time I was 20 I was on the waiting list to undergo a limbal stem cell transplant due to epitherial breakdowns on the surfaces of my eyes.

Following this surgery, I personally saw no significant improvement to my vision, but was told it could take up to 18 months to heal fully. While that stem cell transplant did help with the epitherial tissue breakdown to my eyes, it didn’t improve the vision and by the time I was 22 my vision was at the worst it had ever been so far.

With my sight getting worse and worse I became less and less confident and begun to withdraw myself from the outside world far more.

It was at this point that I first became involved with both Cardiff Institute for the Blind and the RNIB. I became both a service user and a volunteer. While still feeling very scared and really lacking in confidence, I soon begun pushing through those feelings, because I knew I was around people who understood and who’d probably felt the same once.

So I began taking part in activities and courses with Cardiff Institute for the Blind, I also became a volunteer and ended up co-running Visual Awareness courses and becoming a committee member in a County Steering Group. I also started to organise some of the events for a youth group that I was a part of and I was even asked to attend numerous meetings for both Cardiff Institute for the Blind and the RNIB, to give input and feedback, both as a service user and as a volunteer. It was as though I had a purpose again, as though I had a new lease of life.

Then, after about 10 months or so, once again more eye operations came along. I had orbital decompression’s and a cornea transplant lined up. Due to the amount of hospital visits etc, I felt I had too much going on and withdrew from Cardiff Institute for the Blind and RNIB. In no time at all I was back to my depressed, non-confident, old self.

The cornea transplant went ahead when I was about 25 and the vision did improve a little, but nowhere near to where my vision acuity was as a child. The regular hospital appointments continued frequently.

Lately though, I’ve been thinking a lot about things and have decided that, at least for now, I’ve had enough of constant operations and hospital appointments. I’m finally realising that I have to start to accept that my vision is never really going to improve much more now. So it’s time to start accepting that this is my life from now on and it’s time to start living again.
Don’t miss understand me, I don’t mean to put you off seeking treatment yourself, just that sometimes it’s ok to feel like you’ve been put through enough.

The big problem with me is that I’ve always struggled with being seen and treated as ‘different’. My pride has always got in the way of me being comfortable using things like a cane in front of people, for instance. This is still something I’m very much struggling with. By letting my pride get to me, I feel like I’m isolating myself further from the world in the process and that’s making my depression even worse too.

So, if you’ve read my story then firstly, sorry that it’s so long. Secondly and most importantly, the point I want to make is; if you have ever felt anything similar, then you are certainly not alone. I really implore you to take deep breaths and say ‘screw you’ to your pride and take small steps towards freeing yourself from the prison of your own mind. Reach out to Cardiff Institute for the BlindRNIB or any other sight charity. Just see what they can do to help you become the best you that you can be, I promise you will be surprised and you will feel much better for it once you have taken that first step. Sight loss is a terrible thing, but it doesn’t mean it’s the end of who you are, it’s just really, really hard coming to terms with adjusting. That is one of the scariest parts of any sight loss, but reaching out for help really does make a big difference.

Have a great day. Thanks again for reading my story.

 

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Reviews of Conference 2018

Seated delegates. Woman holding microphone for child knelling on the floorPeople at the Aniridia Network Conference 2018 said:

“It gave an opportunity to learn about different aspects of aniridia. It made me feel like I really belonged there.”

Meeting lots of people and having a good variety of speakers made it very enjoyable and informative – helped me connect.”

The results of our survey about the conference tell us that it was very enjoyable and successful. Below is a summary, or you view the full and graphical survey results in pdf format. We have also written a response to some of the comments received and other blog posts about the day.

30 people gave feedback, of who 17 are parents to someone with aniridia. Only 7 had aniridia themselves though.

The general consensus was that the booking process was simple, efficient and easily accessible. Nearly 90% said they were happy with the ticket price of £21 per adult
and £8.50 per child.  This covered approximately 50% of the event costs.  and fundraised money was used to meet the remaining £2,750 expenses. Two people said the price was too cheap and 1 too expensive.

93% were (very) satisfied with the overall event, leaving just 2 respondents who said ‘neutral’. This is a fantastic outcome and shows how valued the conference is and how important it is for us to put on.

Dr Petch talking at a lectern

Dr Petch

All of the sessions were well liked. The ones rated as ‘very good’ by the most people were:

“Dr Moosajee gave a brilliant presentation of insight into the research that is being carried out, keeping it simple and free of jargon, allowing all to understand.

Fern’s personal account was truly inspiring, leaving all who attended with hope.”

Recordings of all the presentations are available on YouTube.

The highest rating was for the lunch and break times! These gave opportunities to talk to other delegates and visit the exhibition stalls.

Delegate talking and eating lunch around exhibition stalls while man with guide dog passes by

Over half of respondents felt that the event struck the right balance between presentations, opportunities to ask questions and meet other people. However over 27% (8 people) would have preferred more time chat.

This suggest suggests that people are mainly attending the conference to gather information.

“Thank you. I enjoyed networking:

  • hearing from young people with aniridia who have achieved so much despite challenges they have faced.
  • sharing our thoughts with other parents in the same boat
  • meeting those I have spoken to in the past over email or read about on the Aniridia UK website.

I also got information about drug research and understanding how hard everyone is working. It made me feel optimistic.”

Delegates talking while sitting and standing

Most people felt a day is the right length for the event and preferred an evening social activity, though many want this to be part day time event.

The most beneficial aspects of the event were:

“The up to date medical information, meeting others affected by aniridia and the
positive nature of the whole event. Made me feel better about the condition in
general”

Seated delegates at tables, watching a presenter and big screen

“It was enlightening, heart-warming and inspiring to hear from individuals and their families about their personal stories and how they are supporting one another.”

2 men a and women talking at a table

In conclusion delegates said:

“We were so impressed by the level of detail to support those attending. It was a great, easily accessible building, which was easy to commute to both by personal and public transport. The venue was well catered, open and spacious. The staff were very helpful and efficient. A great idea to have staff able to meet and guide attendees to the venue, to operate a childcare facility and also to those that cared for the guide dogs. The stalls were informative and the food was scrumptious!”

“I recommended it to anyone who has aniridia, or parents of children with aniridia,
because it is a great opportunity to meet others affected by the condition and gather
useful information.”

“The event was well organised, and it is definitely worth it for me to attend next year.”

We want to thank everyone for coming to Conference 2018 to make it such an excellent day. And huge gratitude to all the volunteers who made it possible, especially to Dave our Conference Coordinator.

Two woman sitting with backs to the camera. One is wearing a Aniridia Network t-shirt. Other conference delegates are in the background.

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Aniridia Map

People with aniridia are spread all over the world. But where is everybody based? How many people are there with aniridia in each country?

It’s impossible to have exact figures, but the Disease Maps website is a useful way to get an estimate of its global impact, if we all contribute to it.

The Aniridia Disease Map shows where people with the condition are based worldwide, for all those who have given their general location so far.

 

Map of the world with markers to show the locations of people with aniridia. Most are in the UK, Europe, and North & South America, but there are a few in places like Russia, Japan & Australia as well.

Currently there are just over 150 people on the map. The majority are in Europe, the USA and South America, but there are also people registered in Russia, Egypt, Libya, Japan and Australia.

We would really like this to grow, because the more of us that add ourselves to the map, the more comprehensive and accurate it will be. It could then be of great use to professionals such as researchers and doctors, as well as aniridia patients themselves.

So please do join the aniridia map and share it with your friends. It would also be helpful to fill out the aniridia survey while you’re there, which will help to build up information about the condition on the site.

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Responses to feedback about Conference 2018

Thank you for all the excellent feedback about this years conference. We will certainly try to put in place many of the suggestions that were made. We will publish the survey results shortly.

There were some points made, that we want to respond to; to dispel any misconceptions and explain why things are done the way they are.

Cost

“I am surprised that the event cost so much to put on. Assuming that the speakers did not charge for their services, I would have thought a cheaper venue of similar quality could be found – maybe outside of London?”

Plate of food including a tart, and two sandwichesThe speakers did not charge to appear. In fact those who were also delegates, paid to be there. We do extensive searches for suitable venues in every city we visit. Resource For London, with it’s discount for charities, is easily the cheapest compared to others of similar quality, facilities, size and accessible location. Catering is the largest single expense even though we choose budget menus. The total cost of just under £6,000 is similar to the conferences we have held elsewhere in the country including Bristol and Newcastle. We cover half of this cost from fundraising income to allow ticket prices of £21 instead of around £45 for adults.

We would love to hear of more low cost conference venues, close to major transport hubs, with capacity for 100 people in cabaret style, plus rooms for the creche and exhibition.

Structure of the day

“The afternoon break could have been shorter, particularly as some of the speakers had left by then.”

We of course hope that speakers will attend for the whole day, to talk with delegates. But their other commitments often only become apparent close to or on the day of the event.

Our feedback surveys of previous events are consistent that most delegates want long break times, because they value the opportunity to meet with others so much. Indeed this year the break times were the most highly rated element of the event! 62% said the agenda gave the right balance while 19% wanted more time to talk.

There have been suggestions to facilitate introductions and also timetable opportunities to chat as alternatives to talks that are less relevant to some delegates. We will look into these good ideas for future events.

“Split the conference into (parallel) sections according to the stage of life the talk is connected to.”

This is very difficult to get right. Many topics are applicable to a range of people. Parents of children with aniridia for example are in both categories of what initially appears to be a obvious segregation.

In the past we have tried running two sets of talks at the same time. Some people complained that they were unable to attend both sets. Repeating the talks is essentially the same as a single track yet increases the burden on speakers, potentially room hire costs and the complexity of having sight impaired delegates moving around the venue.

The timing of presentations is also often influenced by other factors such as length of the talks and slots, and the availability of the speakers. Lastly there is the desire for a sensible sequence so that the day flows well.

Annual General Meeting

“I thought the AGM slot could have been shorter”

“Have the AGM at the end of the conference so those who who do not wish to attend the meeting could leave earlier to travel back home”

We are required to hold the AGM, legally and to be accountable to you, our members. If less than 5% of members (about 30-40 people) attend it, the AGM is not valid. Therefore we have to hold it in the middle of the day, precisely to avoid people skipping it.

We do streamline it but should actually spend longer on the elections to be diligent.

As James described at the end of the AGM, one option is to change our governance model to be a trust, where members and AGMs are not required. This would solve one issue but could create others. We’d love to hear your thoughts on this.

Presentations

“Provide speakers helpful tips on audience, language and presentation of information so that each talk is beneficial to the majority.”

“Hold a rehearsal to give feedback and fix volume problems.”

We do indeed tell speakers to cater for parents, patients and professionals with different levels of understanding and so the need to use simple language. We also provide guidance on designing accessible slides, such as about contrast and font size. Plus we tell them to describe any images.

We do ask for slides in advance and in the past have sometimes organised run throughs, in a bid to catch problems. These are all subject to the speakers submitting their slides on time and their/our availability in advance and on the day.  We will continue trying to improve this, for example the great suggestions of referring presenters to a good example videos or even seeking advice from Fern!

Glen’s talk

“I think it was a shame that Glen Turner’s session was removed from the agenda.”

Yes it was a shame. Due to overrunning by previous speakers we were late by 30 minutes, the same time scheduled for Glen’s talk. Glen’s speech about his life with aniridia was only included at the last minute due to a cancellation by a doctor who was due to appear. So it was not advertised for most of the ticket sale period. Glen’s talk and other videos can also be viewed on YouTube and we had another talk from a patient scheduled: Fern. Lastly, having spoken to Glen  we were confident that he would be able to talk at a future event instead.

Dog bowls

there seemed to be no bowls/water for guide dogs. I know people could bring their own, but this can be difficult.

There were two water filled dog bowls but we admit that we didn’t highlight them. We will add it to our list of things to to tell delegates at future events. We’ll also try to arrange more volunteers to take dogs for walks to spend.

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Liz’s Aniridia Network Conference 2018

Different kinds of people sitting in rows of seats, one using a monocularThe conference venue is nice and bright and welcoming with really good coffee. So we were quite happy to wait for the fun to start.  Being early has meant that the offered guide from Holloway Road station wasn’t needed but actually it was quite easy to find with location being on the same road as the tube station.

Everyone seems to be really friendly though it’s hard to push past the nerves of being in a new place and new people and lots of noise to speak to many people to start with.

I force myself to talk to a lovely lady, her dad and her guide dog, who turns out to be speaking during the conference.  Having that initial really positive interaction made a big difference to how I felt the rest of the day would go.

We were showed were we could hang our coats, put our bags, get a drink and waited for the fun to begin.

I’m really glad my hubby was with me, who has sight as I think I might have struggled with the whole experience without his support emotionally and practically.

I found the speakers very interesting on the whole, but not having been to a conference about something so personal to me before, I found the experience quite intense.

I would definitely recommend you go to a future conference, if you want to find out more about aniridia and get the benefit of other’s experiences.  Even though I needed to pluck up a lot of courage to find and talk to people it was definitely worth it, 100%.

I left knowing more, feeling more like there were different possibilities in the future than I had thought of and like I belonged to an extra family full of support and shared experiences.

I will be waiting keenly for the next conference dates to be announced.

Aniridia Network wristband on a Conference 2018 agenda

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500km Bike Ride Fundraiser

Map showing Matt's route across the country from Aberystwyth to Great Yarmouth.Cyclist Matt Hill took on his biggest challenge yet in aid of the Aniridia Network – riding 500km in a single day! That’s 100km further than the ride he completed for us last year.

On Saturday 16th June, Matt cycled across the width of the country. His adventure started in the early hours, crossing the Welsh mountains in the dark, before heading into Shropshire, the Midlands, Northampton and Cambridge, and finally coming to rest in Great Yarmouth on the East Coast. There he met Martin, one of of our trustee’s to receive our thanks in person.

Matt Hill smiling, with arms outstretched, wearing a white Aniridia Network t-shirt, black trousers and a black cap.Matt was inspired to ride for us again after attending this year’s conference in London, joined by friends who have a son with aniridia, where he saw how money donated last year went towards vital projects and events. This included the £4,400 he raised in that period.

Matt was therefore keen to raise even more money this time around, with a target of £5,000. He ended up raising over £7,100!

Please go to Matt’s JustGiving Page to find out more and donate if you can. If you are a UK taxpayer, please remember to select Gift Aid, which will increase the donation at no extra cost to you.

We thanks Matt immensely for taking on another challenge on our behalf.

 

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Fern Lulham – Living with Aniridia

Fern Lulham giving her speechWe were delighted to welcome motivational speaker Fern Lulham to the Aniridia Network Conference 2018 in April. She gave a very uplifting presentation about her life with aniridia, which got a very positive reaction from the audience. She also took the time to chat with various delegates during the day, which they greatly appreciated.

Below you can see the video of Fern’s speech, followed by reactions to the conference from Fern and the delegates.

Fern is a regular contributor to the Kelly & Company show on AMI Audio in Canada, and she gave a wonderful review of the conference on the programme, which you can hear at the link below.

Hear Fern’s review of the conference

Fern Lulham and her guide dog Nancy in front of the projection screenFern also expressed her thanks on her Facebook & Twitter pages:

“Honoured and proud to speak at #ANUKConf about my life experiences, some things that I have learnt and a challenge to spread hope to everyone for a brighter future for us all! Thank you, Aniridia Network UK, I had an amazing day. #BeHopeful”

We also had a big response from our members who spoke to Fern and saw her presentation. Here are a selection of their comments:

“It’s hard to push past the nerves of being in a new place and new people and lots of noise to speak to many people to start with. I forced myself to talk to a lovely lady and her dad and her guide dog, who turned out to be speaking during the conference. Having that initial really positive interaction made a big difference to how I felt the rest of the day would go.” 

“Fern gave a fantastic, positive, uplifting and passionate speech about living with aniridia, which inspired everybody in the room. It was great to finally meet her in person.”

“Fantastically inspiring speaker, Fern, talking about living with aniridia. She sounds and looks inspiring and showing us how much can be achieved. She went to the US on an exchange and graduated from there. Wonderful!”

“Thank you Fern for being an amazing speaker. I have a little girl with Aniridia and your talk yesterday was truly inspiring, uplifting, beautiful.”

“You were really awesome Fern, very well presented & moving. Well done!”

“Brilliant speech Fern. Totally agree what you said about Mr Hamada, my consultant, as well.”

We are therefore very grateful to Fern for attending the conference. Her inspiring speech and interaction with the delegates had a very positive impact and gave us all plenty to think about. Thank you Fern!

Fern and her guide dog sitting with one of our delegates

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Half Marathon Fundraiser

Katja in her Aniridia Network t-shirt, posing with a young boy, both smiling and holding up their half marathon medals
Katja Lumezi’s daughter Tina was born with aniridia, and from the moment she was diagnosed they have received “immensely valuable” support from the Aniridia Network and Moorfields Eye Hospital.

To show their gratitude, Katja ran the Hackney Half Marathon on 20th May 2018, raising over £630 for the Aniridia Network! We will also receive over £100 as a result of people claiming Gift Aid at no extra cost to them.

On her JustGiving page after the event, Katja wrote:

“I made it! I finished running my first half marathon yesterday. Thank you so much for supporting us with your generous donations which continue to come. We have raised some good money for Aniridia Network, a charity which continues to support people with visual impairment. Thanks a lot, it all adds up!”

We at the Aniridia Network would also like to thank everyone who donated. And we especially thank Katja for taking part in the event for us, we are very grateful!

Katja posing and smiling, in her Aniridia Network t-shirt and black shorts, with her half marathon medal around her neck

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Nystagmus Network & Awareness Day

Text saying Nystagmus in the open, then the Nystagmus Network logo in the shape of an eye, then text saying Nystagmus Awareness Day 20 JuneMany people with aniridia also have nystagmus, and this year’s Nystagmus Awareness Day will take place on 20th June – the day before Aniridia Day!

The Nystagmus Network have celebrated Wobbly Wednesday in November since 2013, but this year they have permanently moved it to the summer. So the main event will be on Wednesday 20th June, and the few days either side will be known as Wobbly Week.

Sue Ricketts, the Nystagmus Network’s Information and Development Manager, told us about the charity and the awareness day at our London conference in April. You can see the video of her presentation below, along with further information about the awareness day.

The theme of this year’s Nystagmus Awareness Day is “nystagmus in the open”. Everyone is being encouraged to make the most of the time of year by getting outside and having fun together, raising awareness and funding in the process.

Activities will include barbecues, garden open days, sponsored cycle rides, sports days and lots more, so there will be something for everyone to enjoy.

Sue Ricketts will be opening her Lincolnshire garden to the public on Sunday 24 June. She said:

“I look forward to welcoming as many friends and neighbours as possible into my garden for Nystagmus Awareness Day. It will mean there are a few more people who know about nystagmus and where to find support and information.”

Cartoon image of a colourful flowery garden, with text saying Nystagmus in the open, Garden Open Day, The Barn, Fenton, 24 June, 11am to 4pm, with cakes, crafts, plants and books. Entry £3 per person, children free, sorry no dogs.

Schools and hospitals are also getting involved, with reception displays, cards and leaflets for visiting patients, and lots of bunting and balloons.

In the lead up to the big day, the charity is running its “how amazing are you?” campaign, sharing stories of adults and children who have achieved great things despite having nystagmus, or maybe even because they do.

Nystagmus Network Chairman, Richard Wilson OBE, said:

“We are very excited about the new date. I have a feeling this is going to be one of the biggest Nystagmus Awareness Days ever.”

Details of how to get involved are on the Nystagmus Awareness Day page. For more information, please contact Sue Ricketts by emailing sue.ricketts@nystagmusnet.org or calling 01427 718093.

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Paul, aniridia and sports

Mixed ability teamI was born with aniridia and did the usual sports at comprehensive school. I was the only disabled person there never mind the only visually impaired pupil there. I never really liked playing rugby, football or cricket for the obvious reasons and lack of confidence, despite loving to watch the football on the telly and listening to the cricket on the radio.

After attending the Royal National College for the Blind in Hereford, I gained a bit of confidence from doing judo and karate. I also discovered parasport such as 5-a-side blind football.

I knew very little of the VI cricket scene until a few years ago when I went to a session that was set up by couple of people, from the Wolvhampton and Staffordshire. I loved it and still do, but now playing in Worcestershire).

Hugby players and coachesPeople at Worcester Warriors Rugby Club are trying to develop an adapted version of rugby for the visually impaired/blind community called hugby. You tackle someone with a big friendly hug. I love this idea and it’s keeps being developing with ideas from both coaches and players.

Recently a group of us with various disabilities including several of the hugby players went to Scotland to have a go at mixed ability rugby. I can tell you that as a person who was born with sight problems and from people who have lost their sight for whatever reasons over their lives, we loved it. Three of us had problems with too much light but I was the only one with aniridia.

So if you want to try sports because you love sport or want to keep fit or just to meet new people and have fun, search in your local area for sports that have been adapted for people who are visually impaired/blind. You never know, you may win gold in the next Paralympics or Commonwealth Games!

By Paul

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