I have lived with Aniridia since birth; and no matter how many ‘specialised’ doctors you see or how many other people with visual impairments you meet, you still feel isolated, different, and misunderstood. Now I don’t speak for everyone when I say that this is the exact reason Aniridia Network is important.
So, when I received an email invite to an in-person conference on the 2nd of September in Birmingham; I jumped at the chance to attend.
When I was booking my place, I noticed that it started early in the morning, so I decided to book to stay at a Premier Inn from Friday 1st to Sunday 3rd September, allowing me to make the most of this opportunity. Something I was also grateful for when train companies announced a strike on the 2nd.
There was a mixture of emotions leading up to the conference, excitement, fear, apprehension. I was excited to be able to engage with other people similar to me but at the same time I was scared of meeting these people because what if they didn’t accept me? What if I came away regretting going? All sorts of what ifs and doubts plagued me. Looking back all of the fear and worrying was unnecessary but hindsight is a wonderful thing.
Remember how I said I booked to go up the day before because it would be easier and there was a train strike on the 2nd? Well, that train strike was extended to cover the 1st and 2nd. Which wasn’t great especially as at the time I happened to be over in America. This added to the stress of the event slightly but thankfully I still managed to make it up to Birmingham with the help of family.
The amount of information provided by the Network to help people was amazing from attaching an agenda of the day all the way to giving instruction on how to get to the venue in a variety of ways from walking all the way to bus and tram information. I have never been to an event where that much thought and detail was giving to help attendees. This helped ease my fear slightly and made me feel safer knowing that at any time I could check and re check the information as much as I liked without bothering anybody.
Finally, the day arrived, ironically, I think I was more nervous in the lead up than I was on the actual day. I arrived at the Library of Birmingham at about 9:25am and found a seat at a table. Now admittedly at the start of the day I didn’t really talk to people because I was still a bit scared but that soon changed.
We started out the day with a talk from Helen Campbell who is a MSC genetic engineering counselling student at Cardiff university. Helen was looking at the experience of people with sporadic and familial Aniridia and those experiencing further sight loss and the psychosocial impact this has. I found this talk particularly interesting as it is something I myself have experienced and gave me hope for the future and how Aniridia and sight loss will be viewed and treated.
The next speaker was Emily Nash who was talking about the improvements that needed to be made to public transport. This again was a talk that really connected with as someone who travels regularly and has often been let down by the current system that is in place.
There were also talks from Vivienne Kit and Dulce de Lima Cunha from Moorfields Eye Hospital who were talking about research into Aniridia, Bernie and Abbie Reddington who were talking about Auditory processing disorder.
This was followed by lunch which got a bit chaotic (though it wasn’t anyones fault) because although we were told what was available it was a buffet lunch which I personally struggle with (mostly due to the amount of people trying to get food at once). Even when I know what is available I still wasn’t sure where what I wanted was. During this break I spoke to other people who were attending on a variety of things; from just getting to know them to talking about hospital experiences and what needs to be changed.
Emily Sterling also from Cardiff university talked about knowing that you’re not alone and the use of the internet in Aniridia patients. I found this talk interesting; finding out about the different themes found when looking at this such as transformational and empowerment. Many of the quotes given about this topic were also very relatable; this one quote in particular resonated with me, “in my teen years it was hard to accept my visual impairment”. Considering this talk was about knowing you’re not alone I would say it was very successful; even hearing the research and quotes made me feel less alone.
Following this we had talks from trustees and patrons as well as Permjit Bhachu from Focus Birmingham.
The conference was then ended, and many people joined the social at the Rep bar where drinks and conversation flowed before some of us went for dinner at the Novetel Gourmet Bar. Again, here food, drink and conversation continued.
Overall, I thoroughly enjoyed my time at conference and as soon as I got talking to people all of my fear and apprehension disappeared. I would definitely recommend attending a conference to others; not only can you engage with research you get to know other people and everything you have ever felt isolated, different, misunderstood, all seems to fade away just for a while.
At the end i also managed to pick up a few books and leaflets to try and help me explain Aniridia and how it affects me to those around me.
I personally will definitely be attending more events that are put on by Aniridia network, whether that be a meet up or a conference.
If you are considering attending an Aniridia network event I would recommend attending even if you only go for a short time. The feeling of being around other people with Aniridias one that cannot be replicated easily.
Aniridia is an eye condition which primarily affects the iris (the coloured part of the eye): this eye condition also has a whole host of secondary conditions which affect a person. These secondary conditions include conditions such as Nystagmus, Cataract, Photophobia and Glaucoma just to name a few. like a vast majority of conditions and disabilities Aniridia is a spectrum meaning how one person is affected might be completely different to how another person is affected.
A person can either have part of the iris or the full iris affected, this means that a person with Aniridia can not control the amount of light that floods into their eyes in different conditions. This is especially seen when going from extreme conditions such as extreme sunlight into somewhere that is darker. it can take a person a couple of minutes to adjust to new lighting and even then they may still be affected due to what are known as secondary conditions.
The condition is primarily congenital meaning it is a genetic condition and often runs in families although Aniridia can also be acquired but this is very rare. Aniridia is also classed as a ‘rare disease’ due to the low number of people how have the conditions, only around 1% of the world population is affected by Aniridia.
Why is Aniridia day celebrated on June 21st?
June 21st is known as the summer solstice which is the day when the sun is out the longest. June 21st was chosen as International Aniridia day because of the significance the sun plays both in the lives of people with Aniridia and in the summer solstice.
What happens on Aniridia day?
Aniridia day is an ideal time to coordinate events/activities as well as raise more awareness for the condition for both individuals and professionals. Aniridia day can be used to raise funds, recruit volunteers and increase awareness and understanding.
The goal of the day is to improve the lives of those living with Aniridia, strengthen the Aniridia community and support Aniridia associations and networks.
The 2023 campaign for Aniridia day is to encourage those affected by the condition to share the aids they help them in everyday life.
If you would like to read a more about how a person with Aniridia experiences the world you can read my blog post ‘Aniridia: My story’. You can learn more about Aniridia here and can view Aniridia day on Twitter.
My name is Amy i am currently 20 years old and i was born with congenital Aniridia.
Aniridia is an eye condition which affects to iris meaning that i have no colour in my eyes. I also have: Nystagmus, Cataracts, photophobia. Foveal Hyperplasia, Limbal Stem Cell deficiency, Dry eye, and a squint. These conditions are known as secondary conditions as they are in relation to Aniridia which is my main condition.
Like I said at the start, I was born with a genetic condition meaning I have lived all of my like with a majority -I say “majority” due to the fact I was diagnosed with a few of these later in life- of these conditions affected how I lived my life.
A newborn Amy looking towards the camera with big eyes with no iris in
It was fairly easy to let me explore my environment as a child, bayed so,Rome was always in my vicinity if I got myself into anything truly dangerous. Yes I walked into walls, yes I fell over and yes I pulled things down and made a mess of the house. in fairness to me what child doesn’t? For me this was problem solving I was figuring out what was what and being a cheeky toddler at the same time. I had evented my own methods of getting around and doing things. Did this mean i would run the back of my foot down stairs? Yes. Did I fall down stairs? Still yes but it was mostly because I was two, clumsy and not paying attention, a majority of the time I didn’t fall down as much as I should have.
I was a very energetic child and didn’t really have the understanding that I couldn’t do everything everyone else could do; because in my mind there was nothing wrong with me, I had never known any different regarding my sight I just thought that was how everyone saw the world. On the whole I could do what everyone else could; swimming, running around parks (even if I did run into things), climbing on everything and anything, I even learned how to ride a bike and how to fence (fencing came later whilst i was in junior school). But there was a few things that i wasn’t able to do either because of safety, the health of people around me or me trying it not being able to do it and refusing to do it again (anyone who knows me is thinking about PE right about now).
A baby Amy sat in a high chair looking to the side again with wide eyes that have no iris A baby Amy sat on the sofa with a toy and dummy. she is looking towards something.
When I started Infants school I had a lot more sight than I do now but I was still able to use methods I had put together independently to help me in school. I had what is now known as an EHCP (educational health care plan). This document is put together by special needs teachers from the school, the child’s teacher, and local council, parents , the child and supported by medical reports from doctors. This meant that the school knew what I needed to be able to help me and everyone who was involved would get together once or twice a year and discuss if any changes needed to be made for the future. A majority of these things did help me like having a one to one TA; However, there were still some issues.
A 5 year old Amy at Draghton Manor waiting to get on Thomas the Tank Engine. Amy has purple glasses on that show her wide eyes with no iris’
One of t\he biggest issues i faced included being able to see the board; for this I was given a screen monitor which meant I was sat at the front of the class at all times on a table of my own. One of the other major issues was being able to find my friends on the playground. This outwardly was a simple fix, give my friends bright yellow hats to wear. Admittedly this was a great idea in theory, in practice it wasn’t as simple. If I didn’t know where to look, where the hat might be (because why would children wear a hat on their head?) and the biggest issue… whether 5 year old Amy would allow these hats out. All three of these things meant that finding my friends was still hard.
Even at the young age of 5 I hated looking different from other people let alone displaying that difference. Refusing help of any kind even if it is needed is classic Amy Woodward to this day.
In Juniors school I had similar difficulties this was added on to by the expectations teachers had of your working changing. Suddenly we weren’t learning through playing with toys we were learning by writing. I struggled immensely with handwriting, I had writing slopes, desk magnifiers, paper with larger lines and in different colours. Yet I still struggled with handwriting because I couldn’t see it but I wasn’t understanding that. I just thought that I was stupid or something because my work looked nothing like everyone else’s. I struggled with homework we were given because work either wasn’t enlarged or wasn’t enlarged properly. Some longer term homework we were given meant we had to try and build something. Let me tell you from experience trying to build a model Taj Mahal when you can’t see the pieces let alone the instructions is very frustrating.
A 13 year old amy after running a 5k fun run
I found junior school to be very frustrating at times, looking back on it my years in junior school seemed to be tester years for what I may need in secondary school. was particularly seen in my year 6 when we had three major things hanging over our heads. SATS tests, year 6 production and moving up to secondary school. I also feel sorry for my junior school TA who was absolutely amazing; but I put her through hell on occasion because i was frustrated and didn’t know how to express it.
September 2014 roles around and i am starting secondary school, a completely different secondary school to the people I have spent the last 7 odd years getting to know. So I already feel like a tiny fish in a massive pond. Throughout infants, and junior school I was bullied for being the “kid alway with and adult” or the “kid with the weird eyes” or just the “weird kid” this didn’t change in secondary school.
A 11 year old amy dressed in her school uniform
Secondary school was the place I learnt how to properly fight. Not in a literal sense ( I couldn’t physically fight anyone).It also happens to be where I turned from annoying whiney kid to annoying argumentative teenager. I had to fight for a lot in secondary school whether that be the right support in classes, support for exams or even something such as being listened to by teachers.
I spent a lot of my class time going to the print as the teachers often forgot to print the materials out in large print for me. You may be thinking “but Amy you could of just used a laptop” and you would be correct unfortunately despite it being in my ECHP that I needed to use technology and learn how to touch type I was only provided with a laptop in my last year of secondary school. Which I was given very little support using.I also had teachers who would try to play interactive games with the class such as throwing a beach ball around to get answers or in drama lessons playing a game where you had to duck to avoid something. As you can tell I can’t remember the names but I do remember not being able to access them and I remember getting my friends in trouble because they were trying to help me play the game that the teach who knows I am registered blind decided to play anyways.
A lot happens in secondary school but a major thing that happened for me personally was losing a significant amount of sight. Now Aniridia is a degenerative condition meaning it worsens over time, most Aniridia patients have stable vision until they are around 40 or older which is when secondary conditions like cataracts generally start causing issues. However at around 13 I lost a significant chunk of sight which meant the glasses I had been wearing made no difference and their was little point in digging me a new glasses prescription as it wouldn’t help, . Although I did continue to wear my glasses partly out of habit (I had been wearing glasses since I was 18 months old) and partly out of denial.
Whilst in secondary school I was supposed to be having mobility training, tough typing training, and beginning to learn braille. None of this happened apart from the one hour of mobility I got at the end of year 6 which is clearly not enough.
This did make taking my GSCEs interesting as despite being 13 my school decided to trail spreading GSCE exams out from year nine . Which essentially meant my year group took three GSCEs in year nine, two GSCEs in year ten and five GSCEs in year 11. This sudden loss of sight caused a lot to happen for me personally for my mental health.
Their was a lot lacking in my mainstream education that I should of had. When it came time to choose sixth form I decided to look at a specialist school for the visual impaired in the hopes it would give me what mainstream didn’t. However I already had a fight on my hands just to get into this school due to the fact each pupil is paid for by the local county council, who don’t like to pay for out of county education when they don’t have to. I think the best line I heard when going fighting my county council on this was “we can provide for Amy with Essex… but we can’t”.
I did eventually get into this specialist school due to the lack of support anywhere else and this is where I learnt the majority of the things I should have been learning since I was a child. I learnt to touch type, I learnt how to use assistive technology I learnt braille and had mobility training. I can’t help thinking how much they would have helped me if I learnt sooner not only physically but emotionally and mentally. I started sixth form in September 2019 and if you remember the first Covid lockdown happened in March 2020. Which quickly put a pin in my independence progress. This is part of the reason I am still not the most competent with braille and technology.
I mentioned earlier losing a significant amount of sight affected my mental health well that was nothing compared to what would happen during my sixth form experience .
March 2020 also happened to be when my sight started deteriorating quickly than I knew how to handle it. I went to Moorefeilds A&E several times and was told several times that I was fine and it was “probably” this or “probably “ that. In the end I was told by a doctor that the cataract in my right i had fully formed but there was nothing to say the left eye would do the same. Now I am 100% convinced my left eye heard this comment and went hold my beer because within about a month we were back in Moorefeilds A&E being told I had cataracts in both eyes now fully formed.
An eye with no iris and a cataract formed in
This meant that I had a little above light perception, I could see lights, some colours and movements . It also meant I had to quickly re adapted and relearn everything I had been taught over the years. The worst part was everything was happened so fast I didn’t have time to process it all. Which severely affected my mental health. I had very severe depression and anxiety due to the amount of uncertainty surrounding everything that was happening. It isn’t normal to see patients with cataracts at 17 and it certainly isn’t normal to see cataracts develop this fast. If the doctors were worried about why this was happening then I sure was.
I went through lots of different testing to try and figure out what was causing my sudden sight loss.. From ultrasounds to X-rays to blood tests and eye scans. I also did a lot of department hopping from infection clinics all the way to the neurology department. During my department hopping I was diagnosed with a muscle spasm disorder, severe anxiety and severe depression.
To this day I still don’t actually know why I lost so much of my sight so quickly.
After a few more years of home schooling relying on formats I have never really learnt like braille I finally had my right eye operated on in August 2021. But because I am me I like to be complicated and the surgery wasn’t as straightforward as the team of specialist doctors I had. Whilst they did remove the cataract and place another lens in my eye; they had use normal stitches -instead of using dissolvable stitches- which you have to have pulled out manually. I can confirm having stitches pulled out of your eye isn’t painful but it is very uncomfortable. I ended up having to have two sessions to pull all of my stitches out due to how severe my nystagmus is.
Fast forward a year and I finished sixth form in June 2022 and was preparing to start university which is stressful for anyone let alone someone with a disability. For me this stress was certainly NOT elevated by DSA (Disabled Students Allowance) who quite frankly have probably caused my some of the highest levels of stress I have had the past year. For example they have only provided me with some of the equipment I needed in the last three weeks of the term. On the other hand the course and disability staff at my university are amazing. They have let me try and figure out what is best for me and listened to me since I first contacted them back in June 2021.
There is something ironic about the DSA staff who have been trained to deal with disabled students restricting my access to equipment and support I need; compared to the university staff, who have either not taught a Blind student or have limited experience with them , in a sense letting me lead both myself and them in where I may need support.
Although I still doubt I actually can do this degree (you didn’t read that Paul) I am actually doing something I enjoy immensely which is going to help me get a job in an industry I love with nothing holding me back.
As of the date this has been published I should be 1 day out of surgery on both my eyes. I will have had the cataract removed in my left eye and in my right eye they will be removing what they believe is built up cells that have formed behind the lens in my right eye . This surgery is to try and save the sight I may have currently in my right eye I can see 1m on a very good day.
Don’t take this as gospel!
Not everyone is like me. I happen to be that one complicated case who has had a complicated life with one complicated thing after another. I attract complications. The odds are someone with Aniridia with have sight which is fairly stable. I’m not going to lie and say that their sight won’t deteriorate because it probably will. I know a few people with Aniridia and for those who have cataracts they don’t tend to cause issues until they are in their 40s. Aniridia like all eye conditions is a spectrum so don’t freak out this just happens to be my experience. It is important to remember this is just my experience. My experience of school, medical conditions or even things like support i have been given is my experience. It will be completely different to someone else’s.
The AWord 