Pioneering advice for young adults with cancerBy Stupid Cancer, Inc.
When Matthew Zadaray was diagnosed with brain cancer, aged just 21, in 1995, the web was in its infancy. A concert pianist and composer, he was told it was unlikely he’d survive, let alone ever play again. He survived. However, ‘the consequence,’ he says now, ‘of my not dying was nearly as tragic as my diagnosis. I had no direction, no one to coach me as to what’s next for a 22-year-old who’s lost his career.’ It took him seven years to meet someone his age who’d survived the disease.
Zadary launched Stupid Cancer, which is today the world’s leading youth cancer lifestyle brand, to harness the internet to make sure nobody else would have to suffer the social isolation he did. ‘Quality of life,’ he says, ‘[for this age group,] is as important as quality of care.’
The site has grown into a global network of patients, survivors and caregivers with millions of subscribers. Together they champion change for 15-39 year olds for whom cancer has become the number one killer, yet lack age-appropriate support to help them deal with the impact on fertility, relationships, career, insurance – the works.
Its main drive is to build ‘meaningful survivorship’ and has lobbied for revolutions in cancer support – partnering with national health institutions and leveraging media and conferences to push for new rights, in fertility and finance for example. 'Isolation is the number one contributor to low quality of life and that's augmented by fear and a lack of age-appropriate communication, with doctors and providers. The number two [problem] is financial burden. We have debt through college loans, we don't need medical debt piled on; we don't need to go bankrupt,' says Zachary.
Its newest product is a mobile health app to replace outmoded call centres which Zachary hopes will have 500,000 users by 2016.
'My doctor may have cured me,' says one of the site’s users, who was diagnosed with ovarian cancer at 26, 'but meeting others who had already been there and done that is what truly saved my life.'
Image 'Koko 2' courtesy of J. Saringo
Last updated: 27th of May, 2014