Retinoblastoma Awareness Week

The Childhood Eye Cancer Trust (CHECT) has launched the ‘Look Sharp for Rb’ campaign this year to coincide with Retinoblastoma Awareness Week.

Retinoblastoma (Rb) is a form of eye cancer that almost exclusively affects children under the age of six. Although around one child is diagnosed with Rb in the UK every week, CHECT’s recent survey found that more than 85% of parents with children in this age category had either never heard of Rb or didn’t know enough about it to identify possible symptoms.

Stephanie Bywater, who works for eyewear industry giant Essilor, was affected by Rb as a child. She says, “I don’t mind sharing my experience. I’m an over sharer if anything, because I don’t see myself as being particularly affected by the cancer.”

Sadly, almost 70% of children who are diagnosed with Rb will lose an eye in order to neutralise the spread of the cancer. This was the case for Steff, who recalls, “My mum had been reading an article in the local newspaper about Rb and the white glow about two weeks before spotting it in me when I was 2. I was just playing in the living room and the sun through the window was being reflected by my retina, so it looked like my pupil was white.”

Symptoms of the cancer can be hard to spot, and can include things like swelling of the eyelid, a squint or the white glow, which occurs when the child’s eye reflects light and the pupil appears white rather than black. It can most easily be seen either in low light or when flash photography is used.

Steff tells us, “Awareness, knowing the signs to look for and when to get your child checked is key. It is scary because there are a lot of symptoms that we don’t usually associate with cancer. Children with Rb often don’t show any normal signs of illness. They don’t tend to have any pain or discomfort until the later stages, when it’s harder to treat. In my opinion, that’s the main drive behind the ‘Look Sharp for Rb’ campaign, to raise awareness and encourage parents to get their children checked. Most of the time it’s nothing at all, but for the sake of a 30 minute doctor’s appointment or a trip to the optician, you could save your child’s sight.”

"Most of the time it’s nothing at all, but for the sake of a 30 minute doctor’s appointment or a trip to the optician, you could save your child’s sight.” - Stephanie Bywater

While many children who are affected by Rb do end up losing an eye, 98% of children are treated effectively, according to findings published by Macmillan Cancer Research. While early treatment is often key for improving the chances that the affected eye can be saved, losing her eye at such a young age hasn’t dampened Steff’s optimism and vivacity.

She tells me, “I had my left eye removed along with a few rounds of chemo and radiotherapy. I also had cryotherapy on my right eye – my sight hasn’t been affected in that eye, but I can’t drive because it left a tiny scar. I suffered one relapse when the cancer came back, but following more chemotherapy I am now cancer free, nearly 20 years on!

I choose not to wear a prosthetic at all now. Sadly, a lot of people have anxiety and confidence issues relating to their experience of Rb. There are some great resources out there for survivors, including a Facebook page I’m active on. Although I can’t drive, all of my friends and family do and I’m a pro at public transport! I’m a bit clumsy because depth perception is a little harder for me, but it keeps me on my toes and it’s a laugh for anyone around when I walk into things. Aside from that, I live my life like any other 24 year old. I like cider and I love cooking. I even hike and rock climb on weekends.”

If you want further information on Retinoblastoma, including symptoms to watch out for, check out the CHECT’s website. If you’re worried about your child’s eyesight, book an appointment with your GP or your optician and make sure that you Look Sharp for Rb. It could change your child’s life.