I had a lovely email from Karina, a Mum of a 3 year old girl, Chloe, who was diagnosed with unilateral retinoblastoma at age two. Karina had noticed one of Chloe’s eyes had irregular movements,and reported this at regular health checks. The doctor didn’t think this was abnormal, and dismissed it, until at her two-year-old check, Karina reported a strange glow in the eye.

It was only then that the doctor took action and Chloe was found to have retinoblastoma. You can read Karina and Chloe’s story here

Karina is an incredible person. She has taken it upon herself to advocate for the screening of babies for retinoblastoma. She is actively doing this, as well as undergoing the emotional strain of her daughter’s regular health checks, exams under anaesthetic and MRI’s. But she is determined to make a difference for other parents and children.

Karina mentioned to me the feeling of guilt that parents of retinoblastoma children go through, that haunting question of “should I have picked it up earlier?” No one can ever erase that guilt, and I’m sure my parents also felt some guilt over the years. I, too, had a lazy eye, which wasn’t seen as a real problem, then my parents saw the whitish spot in one eye, and that’s when the doctors took notice.

I think all babies should be screened for retinoblastoma, even though it is seen as rare. As a geneticist told me, it’s amazing there aren’t more cases of RB, because anything can go wrong at conception, which is when one of the RB genes can just go missing. Why should everything be perfect? It’s food for thought, and an interesting point. And yet another reason why there should be some sort of mandatory screening for babies.

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