Data released Monday to coincide with World Retinoblastoma Awareness Week (May 8-15) reveals a troubling lack awareness of this deadly form of eye cancer.

Retinoblastoma is the most common eye cancer in young children. If not detected early, it’s also the most life-threatening. Each year, doctors diagnose more than 5,000 new cases of retinoblastoma. If caught early, this form of eye cancer is treatable and the eye can usually be saved. But unfortunately, awareness of this disease is low, and it often goes undiagnosed for long periods of time.

A recent survey conducted by the Childhood Eye Cancer Trust found that only 28% of parents had ever taken their children ages six and younger to an optician, general practitioner, or other health professional for an eye check. Half of the parents surveyed weren’t even aware that children can develop eye cancer.

Patrick Tonks, chief executive of CHECT, said it is imperative to increase awareness among both parents and physicians.

“For too long retinoblastoma has been shrouded in darkness – children are left in the dark because some or all of their vision has been stolen and parents and healthcare professionals are in the dark because of a lack of awareness.”

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Delay in diagnosing retinoblastoma can lead to the loss of an eye, or even death. Parents should always trust their instincts and there are several symptoms they should be aware of. These include unusual squinting, changes in the color of the iris, and painless redness or inflammation of eye. White reflections in the eye will also sometimes show up in photos taken with a flash camera.

It’s not only important for parents to be aware of retinoblastoma. Physicians should always address parental concerns relating to eye health and be sure to follow up on any symptoms. It is also recommended that doctors perform a red reflex test following symptoms such as squint or leukocoria to rule out retinoblastoma.

Simple awareness and follow-through can save a child’s vision, or even her life.