29 February 2016
A third of babies and children in the UK diagnosed with childhood eye cancer have a squint as a symptom, according to new figures.
The Childhood Eye Cancer Trust (CHECT) found that 33% of children diagnosed with retinoblastoma (Rb) in the UK between 2012–2015 had a squint as a presenting symptom.
It is the second most common symptom after the more commonly associated white pupillary reflex, leukocoria. The statistics were gathered from the parents of 140 children diagnosed with Rb.
CHECT released the figures today (29 February) to mark Rare Disease Day, a campaign that aims to raise awareness about rare diseases and their impact on patients’ lives.
The rare and fast-growing eye cancer affects babies and children under the age of six. Around one child a week is diagnosed in the UK. While more than 90% of children will survive, an urgent referral and early diagnosis is essential to save a child’s sight, eyes and life.
The main presenting symptoms of children diagnosed with Rb in the UK between 2012–2015 were leukocoria (69%), squint (33%) and a change in iris colour (13%). Redness or swelling without infection was also a symptom reported by parents (9%), roaming eyes or child not focusing (9%), loss of vision (6%) and an absence of red eye in photographs (2%).
CHECT is urging health professionals to carry out a simple red reflex test when a child shows one of the symptoms of Rb and to make an urgent referral if the disease can not be ruled out.
Chief executive of CHECT, Patrick Tonks, said: “Children with Rb usually show no other signs of illness to alert you to their condition, so it is crucial to pay attention to parental concerns about their child’s eyes. Just because it’s rare, doesn’t mean it isn’t there.
“Although this cancer has a high survival rate, many children live with the consequences of a delayed diagnosis – which can include the loss of one or both eyes.”
The National Institute for Health and Care Excellence (NICE) guidelines state an urgent referral to the local ophthalmology department must be made for: children with a white pupillary reflex (leukocoria), children whose parents report an odd appearance in their child’s eye.
An urgent referral should also be made for a new squint or a change in visual acuity and cancer is suspected, or if any child with a family history of Rb presents with visual problems. These children should be screened from birth.
Ezmai’s lazy eye was first picked up when she was nine-months-old but the Rb diagnosis didn’t come until after her second birthday. A week after the diagnosis she had her left eye removed to stop the cancer spreading.
Ms Beasley said: “Ezmai had a lazy eye and we spoke to a health visitor and then took her to the pre-school vision team, but they told me to come back in six months. I kept taking her but they couldn’t find anything wrong.
“My instincts told me there was something wrong but I felt no one believed me and that I was going mad. We eventually got referred to Birmingham Children’s Hospital and it was there that we were told Ezmai had a tumour in her eye.
“We’ve since learned that she was probably blind in one eye for a year, but as she was so young, we didn’t realise.”
Ezmai had the lifesaving surgery to remove her eye last October and fortunately the cancer had not spread. She now wears an artificial eye.
Ms Beasley said: “Ezmai has to go under general anaesthetic every two months so that the doctors can check her eyes, and we visit the artificial eye clinic every three months. She’s bounced back amazingly. We are so proud of her and we are now fundraising for CHECT to help raise awareness of Rb.”
She concluded: “We looked back at an old photo of Ezmai at Christmas in 2014 and we can see a white glow in her eye (pictured) but at the time we had absolutely no idea this could mean she had cancer.”
For full details of the red reflex test visit the charity’s website.
The Childhood Eye Cancer Trust (CHECT) found that 33% of children diagnosed with retinoblastoma (Rb) in the UK between 2012–2015 had a squint as a presenting symptom.
It is the second most common symptom after the more commonly associated white pupillary reflex, leukocoria. The statistics were gathered from the parents of 140 children diagnosed with Rb.
CHECT released the figures today (29 February) to mark Rare Disease Day, a campaign that aims to raise awareness about rare diseases and their impact on patients’ lives.
The rare and fast-growing eye cancer affects babies and children under the age of six. Around one child a week is diagnosed in the UK. While more than 90% of children will survive, an urgent referral and early diagnosis is essential to save a child’s sight, eyes and life.
The main presenting symptoms of children diagnosed with Rb in the UK between 2012–2015 were leukocoria (69%), squint (33%) and a change in iris colour (13%). Redness or swelling without infection was also a symptom reported by parents (9%), roaming eyes or child not focusing (9%), loss of vision (6%) and an absence of red eye in photographs (2%).
CHECT is urging health professionals to carry out a simple red reflex test when a child shows one of the symptoms of Rb and to make an urgent referral if the disease can not be ruled out.
Chief executive of CHECT, Patrick Tonks, said: “Children with Rb usually show no other signs of illness to alert you to their condition, so it is crucial to pay attention to parental concerns about their child’s eyes. Just because it’s rare, doesn’t mean it isn’t there.
“Although this cancer has a high survival rate, many children live with the consequences of a delayed diagnosis – which can include the loss of one or both eyes.”
The National Institute for Health and Care Excellence (NICE) guidelines state an urgent referral to the local ophthalmology department must be made for: children with a white pupillary reflex (leukocoria), children whose parents report an odd appearance in their child’s eye.
An urgent referral should also be made for a new squint or a change in visual acuity and cancer is suspected, or if any child with a family history of Rb presents with visual problems. These children should be screened from birth.
Case study
Tamworth mother, Stephanie Beasley, thought she was “going mad” before her daughter Ezmai was finally diagnosed with Rb, 15 months after her parents first noticed something was wrong.Ezmai’s lazy eye was first picked up when she was nine-months-old but the Rb diagnosis didn’t come until after her second birthday. A week after the diagnosis she had her left eye removed to stop the cancer spreading.
Ms Beasley said: “Ezmai had a lazy eye and we spoke to a health visitor and then took her to the pre-school vision team, but they told me to come back in six months. I kept taking her but they couldn’t find anything wrong.
“My instincts told me there was something wrong but I felt no one believed me and that I was going mad. We eventually got referred to Birmingham Children’s Hospital and it was there that we were told Ezmai had a tumour in her eye.
“We’ve since learned that she was probably blind in one eye for a year, but as she was so young, we didn’t realise.”
Ezmai had the lifesaving surgery to remove her eye last October and fortunately the cancer had not spread. She now wears an artificial eye.
Ms Beasley said: “Ezmai has to go under general anaesthetic every two months so that the doctors can check her eyes, and we visit the artificial eye clinic every three months. She’s bounced back amazingly. We are so proud of her and we are now fundraising for CHECT to help raise awareness of Rb.”
She concluded: “We looked back at an old photo of Ezmai at Christmas in 2014 and we can see a white glow in her eye (pictured) but at the time we had absolutely no idea this could mean she had cancer.”
For full details of the red reflex test visit the charity’s website.
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