Aniridia Network

Hi, 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 Blind, RNIB 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.