Retinoblastoma awareness week

Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six. Around 50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK.  

MPs are being asked to use their position to help raise awareness of the signs and symptoms of a rare childhood eye cancer this World Retinoblastoma Awareness Week 2019 (12-18 May).

CHECT is bringing MPs and those affected by retinoblastoma (Rb) together at a special Parliamentary event. 

Held at Westminster on Wednesday 15 May, the event will give MPs the opportunity to speak to parents of children affected by retinoblastoma, as well as teenagers and adults who had the cancer as a child.

Patrick Tonks, Chief Executive of CHECT said: “MPs can play an important role in raising awareness of the signs and symptoms of this rare cancer during World Retinoblastoma Awareness Week. We are asking them to share information not only with their constituents, but also with healthcare professionals working within their constituency. Currently half of all babies and children diagnosed with retinoblastoma lose an eye to save their life. Greater awareness of the signs and symptoms of retinoblastoma will aid quicker diagnosis, and ultimately improve outcomes for future sufferers. Meeting CHECT members will enable MPs to hear first-hand how important urgent referral and diagnosis is for babies and children with Rb, as well as the longer term impact this cancer of childhood can have on individuals.”

The main presenting symptoms of children diagnosed with Rb in the UK between 2012 and 2018*, were:

• Leukocoria – 70%
• Strabismus – 33%
• Change in colour of iris – 13%
• Redness or swelling without infection – 6%
• Roaming eyes / child not focusing – 6%
• Loss of vision – 6%
• Absence of red eye – 1%

Over 90 per cent of children diagnosed with Rb will survive but more than half will lose an eye in order to stop the cancer spreading. It is a very aggressive cancer, so early diagnosis is vital to save a child’s sight, eyes and life.