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The low-down on Irlen lenses

Cher_Inactive
Cher_Inactive Posts: 4,414

Scope community team

edited May 1 in Sensory impairments

We spoke to @Jennifer14Owen who has Irlen syndrome, to learn more about the condition and how wearing Irlen lenses had changed her life.

What is Irlen syndrome?

Irlen syndrome is a visual perceptual processing disorder that can affect people of any age.  Irlen syndrome impacts around 12-15% of the UK population and this BBC article tells us symptoms include: distortion of words, brightness and glare, poor motivation and impacted reading and writing. 

Due to Irlen syndrome not being picked up by standard medical assessments, the consensus is that the condition remains largely undiagnosed.  

What can help treat Irlen syndrome?

The use of coloured paper and natural lighting can help people with the condition.  While coloured overlays in glasses/filters/lenses known as ‘Irlen lenses’, are beneficial too.  For more information on how to help children with Irlen syndrome at school, please visit this Irlen institute webpage.


Jennifer smiling wearing purple Irlen lenses with her hands in the air

Speaking to Jennifer

@Jennifer14Owen can be seen in a video on the BBC link above and it is her aim to increase awareness of Irlen syndrome across the UK.  

We spoke to Jennifer about her diagnosis and the positive impact Irlen lenses had on her life:

How would you describe Irlen lenses and when did you first begin to wear them?

Irlen lenses are coloured glasses which are not sunglasses or a fashion statement, but young people called them magic glasses or superpower.  I started to wear them back in 2014 because I was diagnosed with Irlen syndrome in 2012.

What difference have Irlen lenses made to your life and what are you most proud of since getting them?

They have made a fantastic difference to my life because I can do things that I could not do before having them.  Being able read a book cover to cover and being an Irlen ambassador, finally being recognised by my hometown for my hard work in raising awareness of Irlen syndrome and doing an event in Welsh assembly and Parliament are things I am most proud of.

What would your advice be for people newly diagnosed with Irlen syndrome?

Every Irlen person has symptoms that are individual and therefore the diagnostician knows the best solution.

Having more comfortable and efficient reading is only one aspect of wearing Irlen filters.  Many people will wear them all the time as they do not make the world dull and dark but colour the world. 

Many thanks to Jennifer for sharing her story with us and a big well done on your achievements :)

Over to you:  

  • Had you heard of Irlen syndrome or lenses before today?
  • Do you know anyone with the condition?
  • Have you any messages of support for Jennifer?
Let us know your thoughts in the comments below.
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Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,993 Disability Gamechanger
    Yes, I have heard about Irlen Syndrome, but only since being on the community, as one of our members @Francis_theythem has said they have this (as well as hypermobility problems & ME amongst other issues).
    Thank you Jennifer for letting us know more about Irlen Syndrome, & for all you're doing to raise awareness about this. There's also some info here: https://www.irlenuk.com/

  • Francis_theythem
    Francis_theythem Member Posts: 120 Pioneering
    I do! If anyone has any questions, feel free to comment or direct message me!
  • HanzRolo
    HanzRolo Member Posts: 47 Connected
    There's a great visual stress group on Facebook too specifically for those who have it or for parents of children who do.  One of the admins does work in the field so has lots of handy bits of information.  I've found it very helpful, supportive and positive: https://www.facebook.com/groups/925630440941637 
  • DonnaMe
    DonnaMe Member Posts: 1 Listener
    This was really positive to read, my daughter was diagnosed with Irlens about 7 years ago. Until recently when she moved into an AP school she was frequently challenged by teachers on her need for blue overlay, blue paper etc. We invited her to try the glasses but she was immediately put off, I'd like to try again with her having read this, where's the best place to purchase (she also wears prescription glasses too) thanks 
  • Jennifer14Owen
    Jennifer14Owen Member Posts: 16 Member
    DonnaMe have go Irlen diagnostician can also have prescription with the colour she needs
  • Ozymandias
    Ozymandias Member Posts: 2 Listener
    Does Irlen syndrome have any connection with Ehlers Danlos syndrome?
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,993 Disability Gamechanger
    edited August 14
    Hi @Ozymandias - I do like your user name (Ozymandias is one of my favourite poems). I also have EDS & haven't been aware of any link between the 2, tho I'm sure that doesn't mean there may not be one. We have another member who has EDS & Irlen Syndrome @Francis_theythem who commented earlier on this post. I also searched on our UK EDS website & found the following: https://www.ehlers-danlos.org/support_groups/lgbtq-online-group/  where both are mentioned. It could be coincidental, but different associations with EDS & other disorders keep emerging.

  • frightenedautistic
    frightenedautistic Member Posts: 21 Connected
    I'm autistic and have suspected Irlen Syndrome so I found this very informative, I've also read about how it is prevalent in the autistic community.

    Visual stress has always been a problem, but when I read online about how it can cause migraines the two clicked together for me.

    I have an app on my phone that tints the screen when I need it and I'm trying blue reading overlays now.

    Thank you to @Jennifer14Owen for all you're doing to raise awareness.
  • Silverfox3824
    Silverfox3824 Member Posts: 7 Listener
    Don't know if I have entered this on the right page but with reference to your interview 'Irlens Syndrome' mine was picked up totally by accident. My mother had been getting migraines for about 5 weeks, so she went to SpecSavers in Felixstowe. The lady asked her to wait, then came back with a print off and informed my Mother it was an online questionnaire she would like her to fill out and come back with.
    When she read the questions she knew straight away, they pretty much were relevant to me and not herself. She asked me to go through the 50 questions.
    Which I did and responded Yes to pretty much all of them. Then I read the heading, if you have answered Yes to 5 or more, you need to be tested for Irlens. 
    That was the tough part, SpecSavers in Ipswich, wasn't having any of it. Irlens the lady said, is not a real syndrome! But she scowled if you really want the basic test I'll be back in a minute. She came back with 5 different coloured sheets of acitate, she said read that page as normal, then with each coloured acitate read the same page.
    So I did and she said oh well you did seem to improve with the blue. 
    She told me there were only two opticians that could help with Irlins. With that I booked in at Scarborough opticians in Felixstowe, they had just improved on the acitate lenses. So I got a pair £500 with this new blue coloured mesh inside the lens that cannot be detected by the naked eye.
    It helped. But I was totally discused with the opticians that was having none of it. 
  • Tori_Scope
    Tori_Scope Posts: 6,575

    Scope community team

    I'm sorry that you had a bad experience with one of the opticians you went to @Silverfox3824, but I'm glad that you managed to get the right glasses in the end. It's good to hear that you've found them helpful :) How long have you been wearing them now? 
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  • HanzRolo
    HanzRolo Member Posts: 47 Connected
    There's a lot of misunderstanding because Visual Stress has so many names: Meares-Irlen Syndrome, Irlen's Syndrome, Scotopic Sensitivity Syndrome and Visual Stress.  Meares and Irlen are two of the people credited for their research into it. 

    I've had discussions with opticians about it before.  One wanted to put prisms into my lenses, charged me for it but it wasn't done.  The optician I had after that was shocked as that's not something they'd recommend.  The new optician put blue light cancelling coating on my lenses and my migraines vastly reduced from weekly to one every 6 months or so if I was under a lot of stress. 

    I've had many debates and discussions about it over the years with experts and other people who have VS.  Irlen is trademarked name, though colorimetry testing is done by a number of different people across the UK.

    There's an NHS PDF from Royal United Hospitals Bath which has a bit more information: https://www.ruh.nhs.uk/patients/orthoptic/documents/Visual_stress_SLD.pdf 

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