Hope and Heartbreak: The two sides of Retinoblastoma

I recently read an article by Dr. Mary Louise Collins …..She is the daughter of world renowned Ocular oncology researcher. She is an Ophthalmologist herself and she had written an article on Retinoblastoma from a personal standpoint in relation to her family. The link to the article is below. 


She talks about how her father Dr. Lorenz Zimmerman got interested in Ocular Oncology and went on to do pioneering work in Retinoblastoma research. Not only her father but several members of her family were responsible for landmark discoveries in the understanding of this disease. Tragically Retinoblastoma struck Dr. Zimmerman’s family when his youngest son,Larry was diagnosed with the disease. Dr. Mary goes on describe how her parents courageously decided to go ahead with experimental treatment and had to fight several in the establishment to do so. Fortunately the treatment cured their son of the disease. Unfortunately the disease was to strike again on Dr. Zimmerman’s family when Larry’s daughter Perry was diagnosed with the same cancer. Dr. Mary then goes on to describe how the research done by her family gave them the courage to fight the establishment and in turn helped change the lives of their own family members and the millions of kids worldwide.

What struck me about this wonderful article was it was scientific in content but from the heart in form. The Zimmerman family struck me as both tragic and fortunate. Tragic due to the multiple times it was struck by the horrible cancer. Fortunate because the family was at the forefront of cutting edge research and at the best position to understand the disease and decide upon the best possible treatment. This is a wonderful article which I would recommend everyone to read.

But recently I saw another side of this terrible cancer. A 4 year old kid from Indonesia had come to us more than 8 months back with classical signs & symptoms of Retinoblastoma. It was diagnosed as such despite the child being out of the usual age group for retinoblastoma. But the parents strangely rejected our diagnosis and proposed treatment and went doctor shopping in Indonesia until they found a “doctor” who debunked the diagnosis and started treating it as something else injecting useless drugs into the eye. We came to know about this since the parents returned with the kid about 2 weeks back to our hospital. The kid by now had multiple metastatic cancer aided in no small measure by the criminal injections of the that Indonesian quack. We still offered the parents an aggressive treatment protocol which may yet save the child but the parents listened to us and disappeared again next day. This is the heartbreaking world of Retinoblastoma and I’m sure this happens in most parts of India as well where doctors treating this dreadful cancer have to fight superstitions, parental denials, costs, cultures, quacks and witch doctors.

These are just two stories on opposite sides of the spectrum. There are many more stories between and beyond them as doctors and researchers fight this dreadful cancer.

Published by Dr. Raghuraj Hegde

Free thinker| Poet| Writer| Traveller| Doctor| Ophthalmic Plastic Surgeon

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