Aniridia – Information and Support
Aniridia is a congenital rare genetic eye disorder defined by the complete or partial absence of the iris. The iris is the muscular structure within the eye that is responsible for opening and closing the pupil, this movement allows light into the eye. It also determines the persons for eye colour.
How does Aniridia affect sight?
Aniridia causes eye and vision problems soon after birth, at around six weeks old. Most people with aniridia also have an under-developed fovea, which is a part of the light-sensitive layer of the eye (the retina) that we use for detailed colour vision – this can further affect eyesight. Individuals with aniridia usually have a variable degree of iris and foveal under development (hypoplasia). This under development leads to nystagmus and impaired visual acuity.
No matter how much of your baby’s irises are missing, aniridia will affect their vision and can eventually lead to other issues in their eyes later in life. Usual conditions that can develop include corneal problems, glaucoma and cataracts.
Aniridia explained
Brooke explains how aniridia is caused and how if affects her sight.
What are the symptoms of Aniridia?
- Missing or underdeveloped iris
- Eye pain
- Severely sight impaired and partially sighted
- Light sensitivity
- Can affect one or both eyes
Treatment of Aniridia
There is no cure for Aniridia but it can be managed with treatment. Any treatment a person is offered will be given to help improve quality of life and ease symptoms. Aniridia can affect different individuals with different levels of severity, therefore treatment can vary.
Eye exams with low vision specialists are important, they can help to determine what types of low vision aids maybe useful to improve your level of sight. If your experience photophobia as a result of the condition special lenses and sunglasses can be worn to combat this. In some instances surgery may be an option, this is more so to treat corneal issues or any problems you experience if you develop cataracts.
Helpful Links and Organisations
Aniridia UK
A UK based, national charity that supports people with rare genetic condition aniridia in UK and Ireland. A support group and charity for people affected by the condition including those who have it plus their family, carers, doctors, educators and other support givers.
We want all these people to be hopeful, confident, supported and well informed regarding aniridia.
Click here to find out more about their services.
Click here to find out more about their events.
Click here to tell your story.
RNIB
A national UK based charity that supports both children and adults with a variety of sight loss conditions. They have a comprehensive page about Aniridia, covering genetics, how it can effect sight, how it can be managed and coping.
Click here to find out more information about the condition
Click here to download the Aniridia factsheet
Connect with other parents and find support with VICTA
Join the VICTA Parent Network – with almost a thousand members! You’ll find parents who have vision impaired children of all different ages and with various eye conditions. You can use the group to ask questions you may have and connect with parents of children with shared conditions or from your local area.
Visit the support section of the VICTA Parent Portal here to find out about support groups, both in your area and online.
VICTA activities
VICTA is a national charity supporting children and young adults who have a vision impairment from 0 to 29 years. We have a calendar of fun and engaging activities across the year to help young people make friends, grow in confidence and gain the skills they need for an independent future.
Visit the VICTA activity calendar >
Stay up-to-date with VICTA’s news and latest activities on social media @VICTAUK.
Blind Mum Vs the World
@blindmumvstheworld on Instagram.
Hannah is a content creator sharing her journey as a parent and young person with oculocutaneous albinism, nystagmus, photophobia and Oscillopsia and her guide dog.
Albinism Adventures
@albinismadventures_harry on Instagram.
Toddler Harry has Oculocutaneous Albinism and his family share the journey from diagnosis, through development stages and raise awareness for what the condition involves.
Harry and mum Jessica
@harrytathamsanderson on Instagram.
Mum Jessica share Harry’s journey enjoy the world around him and raising awareness for young children with albinism.
