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Dr Snigdha Gorana's avatar

Deeply resonated with this powerful note, Dr Stacy. Often patient voices are celebrated but not respected, especially when companies benefit without offering fair compensation or support.

This callout is timely, necessary, and courageous.

And thank you for sharing what a better way of standing up for dignity and equity looks like.

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Robert Hershey's avatar

I would be curious to know how other childhood cancer survivors would experience sharing their story. Mine makes me feel complex emotions and is unique to my environment, however, maybe this resonates with others.

I was 4 when I was first diagnosed and 8 when I was taken off treatment, which makes cancer my earliest childhood memory. As I grew into young adulthood, I began sharing with more people about my past and background, and cancer became an "object" in my story.

I learned and experienced how it made others feel, how it made me feel sharing, and the types of attention it gave me.

To be honest, I didn't like the attention. But then, as a survivor, I felt obligated to share my story more powerfully or profoundly because it's the voice that was given to me. I felt like I needed a platform to share my story, but it became another cyclical pattern, doing it out of obligation, to guilt, to freedom, and back to obligation.

For anyone who has experienced a chronic and fatal illness, there is pressure to make oneself stand out more in a crowd(audition for The Voice, America's Ninja Warrior, Survivor...) or blend in and hide one's medical background. But I think that there is a magical place where I've learned that my uniqueness and giftedness exist with/without cancer. And my cancer story doesn't make me unique or make me more special than an average person.

There was probably a time in my life, admittedly, where I felt like the best thing I could do was "sell my story," not so much anymore.

I really connected with this post and will be spending more time thinking about it. Thank you!

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