Andrea Ruano, Creative Director at Youth Cancer Europe, shared on LinkedIn:
“While yesterday’s exciting news of Spain winning the World Cup dominates the headlines, I feel a compelling need to speak out about something cancer-related before it gets completely overshadowed. We are already eleven days away from August, and the visibility for July’s Sarcoma Awareness Month is noticeably dwindling. It follows the same frustrating pattern every year: a brief wave of public ‘hype’ that quickly vanishes, only resurfacing if a public figure tragically succumbs to the disease.
To be completely honest, it is infuriating. While the US dedicates an entire month to Sarcoma, here in Europe we are fortunate to get even a week. Seeing my LinkedIn feed filled with stories of triumph and calls for research only reminds me of the friends I have lost along the way, regardless of their specific cancer type. They all belonged to the most overlooked segment of our society: Teenagers and Young Adults (AYA). I lost one friend at just 18 to osteosarcoma and another at 29 to breast cancer with bone metastasis. Now 34, I am entirely exhausted by this continuous loss and deeply frustrated by how society, the healthcare system, and allegedly ‘great’ organizations repeatedly fail these young people. I have first-hand experiences that put them to shame.
To keep this focused, I have spent the last 12 years working tirelessly to advocate for improvements at the European level, even as I transition out of the AYA demographic myself. My efforts have never been about seeking credit or glory; I do this because cancer diagnoses among teenagers and young adults show no signs of slowing down, and future generations will inevitably face these same battles. I want to drive real change. Although I am not a scientist, I know that the newest drug utilized during my own treatment back in 2007 was developed in the 1980s. This lack of progress is unacceptable. Because sarcoma falls into the ‘rare diseases’ category, research remains minimal, yet these young patients deserve so much more: better innovation, advanced surgeries, and a higher quality of life afterward.
Watching the stream of awareness posts over the past few weeks has left me struggling to articulate these thoughts.
- Why is sarcoma only discussed in July?
- Why does Ewing Sarcoma only trend when a celebrity dies? It is deeply unfair to the thousands of young people currently in hospitals across Spain.
- Where do they fit in once the month ends? Having gone through treatment in 2007 before the rise of social media, I recognize how vital today’s online support groups are for finding comfort and community.
However, this reflection is a protest against a system where the word ‘Sarcoma‘ simply disappears the moment July ends.
This should never be accepted as the norm. These young people deserve far better.”
Other articles about Sarcoma on OncoDaily.