By Narrelle Gilchrist
I was born with cancer – retinoblastoma, a rare cancer of the retinas. My first five years were filled with surgeries and treatments, until I was finally cancer-free. But I was lucky – lucky that it was caught early, lucky I kept most of my vision, lucky the cancer didn’t spread. Retinoblastoma, when treated early, has a cure rate of 96%. And yet, each year, hundreds of children die or go blind from retinoblastoma, even though they don’t have to. Lack of awareness means that too often, this cancer goes undiagnosed and untreated, until it is too late.
What is retinoblastoma? Sadly, that’s a question most people don’t know the answer to. According to the National Institute of Health, retinoblastoma causes retinal tumors in children under the age of 5. In some cases, like in my family, it can be hereditary. But most of the time, it’s unexpected and that makes it difficult to diagnose.
According to an expert from the Cancer Diseases Hospital, because the disease is rare, most pediatricians know little to nothing about retinoblastoma and are unable to recognize a case. My grandparents saw that reality first hand. When my mom began experiencing symptoms at the age of 2, they took her to doctor after doctor, all of whom failed to diagnose her with cancer. By the time they found a doctor familiar with the disease, it had advanced to the point where the only option left was to remove her right eye. Decades later, history would repeat itself. At her first yearly check-up, my sister’s pediatrician failed to diagnose her cancer. It was not until she went completely blind that she was finally diagnosed.
Harvard University tells us that the consequences of late diagnosis are severe. Children with later diagnoses lose more of their vision, and doctors become more likely to simply remove one or both eyes. The longer the tumors go untreated, the greater possibility that they could spread to other parts of the body, such as the brain. And that’s why, even though cure rates can be as high as 96%, the National Center for Biotechnology Information reports that in some parts of the world, they are as low as 33%. In Zambia, health officials told local news on June 28th, 2015, that retinoblastoma is the leading cause of death for children under five.
These are lives that we can save. I want every child with retinoblastoma to be as lucky as I was. By starting programs and raising awareness, we can save so many lives, so many children. My children will likely have retinoblastoma one day, and I dream of a future where they, and all others like them, will be able to get the treatment that will save their vision and their lives.
“Retinoblastoma is Leading Cause of Death of Under-5 Deaths.” Zambia Daily Mail. June 28th, 2015. https://www.daily-mail.co.zm/?p=34774
Kaiser, Dr. Peter, et al. “Retinoblastoma.” Digital Journal of Ophthalmology. January 13th, 2003. Harvard University. http://www.djo.harvard.edu/site.php?url=/patients/pi/436
“Retinoblastoma Outcome in South Africa.” National Center for Biotechnology Information. December 2014. http://www.ncbi.nlm.nih.gov/pubmed/26042269
“Retinoblastoma.” National Institute of Health. https://ghr.nlm.nih.gov/condition/retinoblastoma#diagnosis
“Retinoblastoma.” Medline Plus. https://medlineplus.gov/genetics/condition/retinoblastoma