Penarth woman says before syndrome diagnosis she was ‘hiding in the dark’

Glamorgan Star news 09/05/2022

2 minutes read

(Left to right): Alan Penn, Hannah Louise Millerand Helen Irlen.

An ‘Irlen Ambassador’ from Penarth is aiming to spread awareness about a little-known syndrome that could be affecting as many as one in seven people.

Hannah Louise Miller, a 27-year-old woman from Penarth, was diagnosed with Irlen Syndrome at the age of 17. Irlen Syndrome is a disorder caused by the brain’s difficulty in processing visual information.

Hannah struggled before her diagnosis in secondary school, as she was unable to concentrate, could not retain information and struggled with her behaviour due to her condition. Hannah says that she “thought (she) was not going anywhere in life”, as her teachers told her that she was just simply not trying hard enough.

Although Irlen Syndrome is not widely known, it is believed that 14% of the population are living with the disorder, according to the Irlen Syndrome Foundation. There are numerous symptoms including: depth perception issues, environmental distortion, light sensitivity, frequent headaches and many more.

Before Hannah’s diagnosis, she had never heard of Irlen Syndrome and it came as a shock to her as she did not realise that the symptoms that she lived with everyday were part of the disorder. While in college in 2012, a learning screener assessed Hannah and diagnosed her with Irlen Syndrome after she had flagged up her trouble copying text from the board and noticed she had been blinking a lot. Hannah says that her diagnosis felt like a “weight had been lifted” off her shoulders.

Helen Irlen founded the Irlen Institute in 1983, after she discovered that a sub-group of adults and children with learning disabilities benefited from reading material being covered with coloured transparent paper. This led Helen Irlen to create coloured spectral filters, that can help improve the symptoms Irlen Syndrome sufferers face.

Hannah has been wearing spectral filters since 2015 and she feels that “without them (she) would be hiding in the dark”. However, Hannah must regularly pay privately to get her filters and that is a financial strain.

The NHS in Wales and England do not provide any support for those living with Irlen Syndrome as many ophthalmologists doubt the syndrome’s existence. But for Hannah that is infuriating, “the NHS do not realise how it affects sufferers in their everyday life”, says Hannah. She believes that more research into the syndrome is needed to help people get diagnosed sooner and help them to live with the disorder.

Hannah is now an ambassador for Irlen, allowing her to share her experiences across Wales by talking at events such as the Irlen conference in 2019. Hannah’s aim is to spread awareness for her syndrome and to have help for Irlen syndrome more accessible for those who need it.

🌟 This article first appeared in the printed edition of the Glamorgan Star on 05.05.22.