Our Complete Article Collection

MACS- the UK’s national charity for children born without eyes or with underdeveloped eyes.

MACS started life in 1993 as a small support group run by, and for, parents whose children were born with Anophthalmia, Microphthalmia and/ or Coloboma. These terms mean that the eye/s are missing, or are small and underdeveloped. Approximately 80 to 90 affected children are born in the UK every year and MACS – as the UK’s only charity supporting people with these specific conditions – has grown in response. Despite this, we’ve stayed true to our roots, continuing to place the needs of our community at the core of all that we do. Impact on sight can vary greatly. … Read more

Caoimhe’s Journey- by Mummy Deirdre Burns

Caoimhe is four years old and is my youngest daughter. She has two older siblings, Cara, 10 and Lorcan, 14. When Caoimhe was born, she was a healthy 6lb baby girl with no problems at all but at a year old, I started to notice that her right eye was turning in. I mentioned it to the health visitor and she referred us to our ophthalmology dept at the local hospital. Her eye tests showed that she did need glasses and we attended regular check ups. Her sight was getting progressively worse and so was the turn in her eye. … Read more

Behçet’s disease and the Eye

How are the eyes affected by Behçet’s disease? Eye involvement in Behçet’s disease has been recognised since the time of Hippocrates. Estimates of the prevalence vary in different countries and may represent differences in the disease, in access to healthcare and in available treatments. Up to 70% of patients with the Behçet’s disease will get eye involvement, and current estimates from around the world indicate that severe visual impairment occurs in 25% of involved eyes. Accordingly, the detection and treatment of eye involvement is vital. Despite the fact that ulceration of mucous membranes in the mouth and elsewhere are so … Read more

Red Flags: Signs that your child is suffering from vision problems

August marked Children’s Eye Health and Safety Month (as well as it almost being time to go back to school!) and the World Health Organisation has found that 19 million* children in the world are visually impaired. Of this amount, 12 million are visually impaired due to refractive errors which can be easily diagnosed and corrected through a routine eye examination. When it comes to children’s sight, early detection is key to ensuring that your child has the visual skills that they need to do well in school, sports and other activities.  But, do you know how to spot the warning … Read more

The Rising Threat of Poor Eye Health among Children in the UK

In the United Kingdom, there is an increasing risk to poor eye health among children, as 1 in 5 kids have an undetected vision problem. What’s even more alarming is that 25% of parents said their children never had any form of an eye exam, and 8% couldn’t even recall the last time their children had one. Despite these distressing figures, the UK National Screening Committee, a government body responsible for performing the reviewing the childhood vision screening, advises that eye tests should only be conducted if kids are having vision problems in school or suffering from a chronic illness. … Read more

Battling for answers – My quest for the non-existent definitive.

Scarlett is five years old and in her very short life she has had a hell of a lot of things thrown at her.  At four and a half months we were told she had a problem with her vision, which in itself is an awful lot to comprehend, but some days it would be wonderful if it had just stopped there! I speak with many parents through my role of running Through Scarlett’s Eyes and it is clear that we all share one thing in common, the shockwaves following the diagnosis of a sight problem continue to plough throughout … Read more

Nystagmus experts will provide research updates at Open Day

Many of the UK’s most knowledgeable experts of the eye condition nystagmus will be attending the Nystagmus Network Open day at the Hilton Hotel, Reading on Saturday 7 May.  The Open Day is an annual event where people with the eye condition and families of children affected by nystagmus gather to meet vision scientists and eye health professionals. The day will feature updates about; identifying more and more of the genes associated with nystagmus and new tests to measure how nystagmus affects vision. Current work includes, looking for answers to questions like whether contact lenses help and whether there’s an … Read more

Living in Harry Potter’s World

Despite our best efforts, Ronan’s world is like living with Harry Potter. People appear and disappear rather randomly. When something is required, he asks for it and it appears. Equally, if he drops something, it is gone forever. While I can imagine quite a few children who would find living with Harry Potter rather exciting, it leads to endless distress for Ronan. He tries never to put down something he wants, often holding multiple items with his hands, and a few more with his mouth or chin. Full blown tantrums are always waiting in the wings at any time we … Read more

Mia-May her journey so far……Daddy’s story

So I have been reading a few stories and articles online since finding out my daughter Mia has Leber’s Congenital Amaurosis (LCA) and all of these articles and stories have been from Mums so I have decided to write a story about Mia from her Dads side of things hoping that other fathers will read and see this and help them through this challenge in life from a dad’s point of view. Mia was born in July 2014 she was a breach baby and was born through planned c section which Jo (Mia’s mum) had a healthy pregnancy and the … Read more

Cameron’s smile – By Carla Golledge

On 10th December 2012, our lives were changed forever when our son Cameron entered the world. He was born with a rare genetic condition called Norrie Disease, which was discovered at 8 weeks old. Being told my son has no vision will be etched in my mind for ever. That day broke my heart, I could of never imagined a way forward. For months i spent the days sobbing into my pillow. I wanted to bundle my baby in bubble wrap and escape from reality. Every hour of every day i spent online, looking up the what ifs, but no … Read more