50 years with aniridia

To discover that your child has been diagnosed with Aniridia is upsetting and stressful.  In 1964 it was devastating.  Diagnosis: blindness, prognosis, no hope.  I have read my recently deceased mothers diaries and her hopelessness, despair and unfounded guilt are etched on every page.

Two years later, pointing at a plane passing over our London back garden, brought my parents untold joy. I wasn’t blind!

Mainstream schooling followed.  I learnt to ride a bike, ignoring frequent crashes, and played outdoors unsupervised, as most children did in the 1970s.  I recall riding at top speed with a group of my friends to the park.  My eyes just never registered with me in my childhood and my parents never over protected me.

Strangely, it wasn’t until senior comprehensive school in 1978 that my parents encountered prejudice, the like unheard of today.  The teachers asked my parents to remove me as my eyes were “disturbing”.  Despite pointing out that I was on or near the top of the class in most subjects, the school refused to budge.  They claimed I should go to a specialist school for the disabled even though I had no learning difficulties at all.

My parents were self-employed at the time and their business was doing well.  This gave them an option not open to most families then or now.  They sent me to a fee paying private girls school where I encountered no further prejudice, made good friends and found high expectations in learning.  And learn I did, leaving school with 8 O’Levels.

I wanted to be a doctor but was firmly told by my careers advisor and my parents that this would not be suitable for me.  I remember it being explained to me that no patient would trust a doctor that couldn’t read drug labels.  Visual aids were not considered!

My options limited in the 1980s I went to secretarial college and learnt high speed touch typing.  Blank keyboards levelled the playing field!

As the 90s turned to the noughties, computers entered the office.  I found I had a knack for picking up software and soon mastered many systems.  Now I program databases, with a big screen provided by my employer.

Visits to the doctor, whether my GP or my eye consultant often resulted then and now in excitement and a gathering of students accompanied by a polite request as to whether they might take a look!  I was told this would probably be a once in a career opportunity so how could I say no?  My consultant would bring in nervous students, warning me to give away no clues, and ask them to diagnose me.  Their nervous efforts, under the stern watchful eye of a senior consultant, always brings a wave of pity from me.  My consultant would berate me afterwards for blurting out clues to the hapless students!

In the 90s I met and married a wonderful man who did not give my eyes a single moment of doubt.  We had a son who inherited my Aniridia.  He received all sorts of help and assistance at school and is now a confident 20 year old.

Then we had our daughter, born with normal vision.  Oddly I felt more at sea with her than with my son.  How should I deal with a daughter who could see so much better than I?  I spent hours staring at her beautiful blue eyes in fascination.  She is 12 years old now and Mum and Brothers helper around the house without complaint.  She is an expert on the condition and explains it to all comers.

I was assessed a few years ago by Action for the Blind and I attended a course to learn what assistance I was entitled to etc.  It was a surprise to be told that I had amassed a large variety of coping strategies in my everyday living that were completely sub-conscious to me, until discussed with an expert.  I realise now that I do a lot of things differently in order to retain my independence as much as possible and keep my status as a “normal” working mum intact.  I still do the food shopping, washing, cooking and go to work full time.  My husband does the hoovering (he can see the dirt!) and ironing and changes all the lightbulbs!

My independence is critical to me.  I will go very far to be considered just another working mum.  I have always said that I want to be someone who just happens to have aniridia, rather than a disabled person who manages to have a job and a family.  It is so important that aniridia does not define us.

If you are on this website and reading this because you are looking for information, reassurance and most importantly hope, because someone you love or care for has been diagnosed with Aniridia I only have one thing to say:

It’s going to be OK.

You know they will have problems in life, that their options may be limited.  They however, will simply get on with the business of living.  If they are a child, then trust in their resilience.  They will achieve things in life you thought unlikely or even impossible, simply because no one told them they couldn’t!!  And, if they reach a wall they can’t climb they’ll simply try another route around it, just as I did.

By Annette

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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
This entry was posted in Parents' accounts, Patients' tales. Bookmark the permalink.

2 Responses to 50 years with aniridia

  1. Jessica says:

    Annette,
    I have an 19 month old daughter with aniridia, she is called sophie and she is the love of my life. I have read your post this evening and found it inspiring and incredibly positive, Iv gained great comfort in you kindly sharing your experiences and Iv found it reassuring.
    At 8 weeks old doctors told us Sophie was completely blind and referred us to a specialist in Manchester for further investigations, I can completely relate to your mothers initial despir and grief, we was devastated and I was inconsolable until we finally got an appointment in Manchester and Sophie was diagnosed that day. I too recall a significant amount of trainee doctors invited in to see the baby with aniridia. I was however given hope at that appointment that Sophie was not in fact blind but would have some vision impairment, I remember feeling overwhelmed with joy that there was hope and Sophie would in fact live a relatively normal life.
    It was lovely to share your story and obtain a personnel experience point of view as neither myself or my parter have the condition or had even heard of it prior to Sophie diagnosis.
    Sophie certainly does not let it hinder her in any way and she joins in with other children at nursery and playgroups the same as any child. It’s safe to say she doesn’t miss a trick! We have talked about having more children but I wonder how I would feel having a child without aniridia, we are so used to Sophie and her beautiful jet black eyes, to us she’s completely normal.
    I wish I had read your post in the dark days before I was fully informed, it would have been a lifeline I’m sure, I thank you for sharing your wonderful experience, it has really given me a huge amount of support, I’m sure Sophie will continue to amaze us everyday. I love reading people’s experiences regarding aniridia, especially from someone like yourself who has not let the condition stand in their way of anything, it gives be great hope for Sophie’s future, thank you.
    Jessica

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