Stop Cancer Stealing the Eyes of Babies in the UK

Rare diseases like retinoblastoma can be tricky to detect, mainly because health professionals do not come across them regularly. Some professionals may never see a case throughout their career. This is why continually raising awareness amongst professionals is so important, to regularly remind them of this rare disease, the signs and symptoms, and the simple test to detect eye cancer.

One family’s recent experience highlights this issue.

Stephanie Beasley first noticed there was something wrong with her daughter Ezmai’s eye when she was nine months old but she wasn’t diagnosed with Rb until she was two. Just a week later she had her left eye removed to stop the cancer spreading.

Stephanie says: “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 with Ezmai 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 in October last year and fortunately the cancer hadn’t spread. She now wears an artificial eye and is adapting well to it.

This eighteen month delay meant that there was no other option than to remove the eye. Earlier diagnosis might have lead to a different outcome.

Since starting this campaign CHECT has been able to run a Facebook advertising campaign to raise awareness of Rb among health professionals – it reached 14,608 health visitors and doctors and led to 912 people clicking onto our retinoblastoma guide to learn more.

Your support can really help save us to save live, sight and eyes.

Links:

• Signs and symptoms of Rb