A mother and son’s perspectives of aniridia

Thirteen and a half years ago, if you had asked me what Aniridia is, I would not have a clue. But an event which happened in 1999 changed all of that: my son Daniel was born.

The first few months of Daniel’s life were fine – as much as they can be for first time parents! And then, in March 2000, my health visitor noticed Daniel’s eyes flickering up and down as he lay on his changing mat. What followed was every parent’s worst nightmare: the confirmation that there is ‘something wrong’ with their child.

Daniel was eventually diagnosed with Aniridia in October 2003. Prior to this the consultant ophthalmologist at Queen’s Medical Centre, Nottingham, was unsure of what condition Daniel had. At one point we were told it was Peter’s Anomaly, only to be told on the next visit that it wasn’t. No doubt any parents who are reading this will know the barrage of information you are given only to be ushered out of the door and subsequently forgetting all that has been said apart from the most important of facts: your child is visually impaired.

Finally, in 2006, we had confirmation that Daniel has partial aniridia. He has regular hospital visits and wears spectacles to control his squint. He did have nystagmus  but bizarrely this has disappeared. Daniel is a very lucky young man. I keep telling myself this. It could be worse. It should have been worse. He has partial sporadic aniridia and thankfully his vision is stable and his eye muscles are strong.

And yet Daniel continues to face stigmatism due to his vision. It seems to me (and I could be wrong) that because Daniel does not walk around with a white cane and a guide dog in tow, people can be very dismissive of his disability. Daniel is very independent but he has poor vision. He looks ‘normal’ and acts ‘normal’ and so society are very judgemental when they see a teenage boy looking through a monocular whilst standing at a bus stop. They stare and make comments. It can be very distressing for me. I wanted to know how Daniel copes with it.

And so I decided to ask him. What follows is a teenage account of having Aniridia and all that goes with it. I hope you find it helpful.

What is it like having aniridia?

(Laughs) I don’t really know! You’re asking me to describe something that I think is normal. I don’t know what it’s like to not have Aniridia, if that makes sense. I don’t know anything different.

You say that you don’t know anything different but are there times when you feel different?

Yeah. When I have to use my equipment (monocular, magnifier, raised desk) at school – well my old school. I have been called names and stared at. Sometimes people just want to look at them because they are curious but that makes me feel awkward.

At my old school I got bullied a lot about using my equipment. It wasn’t a great time. I felt different and it upset me. Things are better now at my new school but I still feel different when people are looking at things that I can’t see. Things like planes or hot air balloons in the sky.

What is the best thing about being you?

Everything! (laughs) I love my family, being around my family I mean. They are a huge part of my life.

And the worst things?

You don’t know you’re different until it’s pointed out to you. It’s hard because you feel ‘normal’ but then your differences are highlighted.

How do you deal with that?

I get on with it. I can’t change how people are and I don’t want to change who I am. I would not change my condition – if there was a ‘cure’ for aniridia I would not take it. Because it is a part of me, it’s who I am.

What are your plans for the future?

I want to go to university and succeed in that. I’d like to be a chemist. I don’t think my condition will affect my goals. I think I can pretty much do anything I want to!

Are there any things you find hard to do or cannot achieve?

I can’t see long distance. Roads and streets are a nightmare! I cannot read small text and I hate bright lights as it hurts my eyes and gives me a headache.

I won’t be able to drive either. That upsets me because I want my independence but it is something I just have to deal with.

Also there is a chance I will pass on aniridia to any children I have with my future wife (smiles shyly at this). This makes me feel sad. I don’t want my children to go through what I have gone through with bullying and stuff.

Perhaps when you have children society will have changed and people will be more understanding. What do you think?

Maybe. Everyone has the right to feel ‘normal’ don’t they? I know that when I’m with my friends and family I feel the same as everyone else and that’s good. But it is other people’s reactions that makes me feel different.  People should think before they stare or make comments.

If you were Prime Minister of the UK what would you change?

I would give disabled people back their Disability Living Allowance. It’s wrong that so many people have had their money taken away. I would also make sure funding is in place for blind and visually impaired people so they can use services that would help them.

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About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
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