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Archive for May, 2010

May 9-15 marks World Retinoblastoma Week, and like many Rb warriors, this is the big push to raise awareness about retinoblastoma.

If caught early, prognosis is excellent! The problem is that very few people catch is early due to lack of education about the warning signs and/or what Rb even is.

You can certainly read within RbNE to find out personal stories and information about parenting with Rb or cancer in general. However, I urge you to visit Daisy’s Eye Cancer Fund for a wealth of fantastic information!

I’m thrilled to say that educating people — especially ourselves — about retinoblastoma has been a very rewarding experience. For the past few years, my daughter (an Rb survivor) and I have been speaking on behalf of Camp Sunshine at different fundraisers to help raise awareness about retinoblastoma. In addition, we also speak at a number of cancer related classes (Biology of Cancer, Health Care classes, etc) and have reached more than 100 students on the topic of retinoblastoma. Thanks to Professors Sheila Barry and Craig Almeida, there is a picture of leukoria in their new textbook “Cancer: Basic Science and Clinical Aspects.”( Page 87).   I still have students and former students contact me whenever they see a picture with a white reflex. This past year, my brother gave his medical school graduation speech and mentioned leukoria and retinoblastoma. Hearing him say this to a room of future doctors brought me to tears.

Finally, this website has been helpful in raising awareness of retinoblastoma. Every few months, I hear from a parent who was researching a “white glow” in their child’s eye and they were led to this site. In most of those cases, the child did have retinoblastoma.

I recently brought my son in for his 1-year appointment. Our pediatrician had just retired, and we were meeting with his new pediatrician. The young doctor had just finished her training and was starting in this new practice. I made sure that I talked about retinoblastoma (she had never seen a case before — not uncommon, though). When she quickly peered into my son’s eyes with her opthalmoscope, I asked her to please turn off the lights and check again. (turning off the lights dilates the pupils for better access to the back of the retina). She said, “Oh, don’t worry, I saw the back of his retina.”

“I know. It’s because I know for a fact that he does not have retinoblastoma. However, if my daughter’s pediatrician had just taken the extra 3 seconds to turn off the lights when she was a baby, we might have avoided an enucleation and 6 months of post-surgical chemotherapy.”

To avoid inconveniencing her, I walked over to the light switch and let her know that I could be helpful and turn the lights off for her…. she looked a bit more carefully and moved on.

I can’t say with any confidence that she did this with any other baby after we left. But, simply knowing more about retinoblastoma was a small step.

So, learn more! Know more! Say more!

Happy Rb Awareness Week!

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