All too often for these individuals, a once-normal social life is thrown to the wayside and replaced with doctors’ appointments and treatment regimens. Friends and family members may not fully understand what their loved one is going through. A new app is here to help.
Cancer can be isolating, especially for adolescents and young adults (AYAs) who have unique needs. But it doesn’t always have to be.
Thanks to a new smartphone app, AYAs diagnosed with the disease can connect with young cancer survivors.
In the United States, more than 70,000 people between the ages of 15 and 39 are diagnosed with cancer each year, many of them put into treatment centers for pediatric patients or with those who are decades older than them.
All too often for these individuals, a once-normal social life is thrown to the wayside and replaced with doctors’ appointments and treatment regimens. Friends and family members may not fully understand what their loved one is going through.
Stefania Rigon, 34, experienced this firsthand after being diagnosed with metastatic cervical cancer last year.
“Nobody who did not live this life-changing trauma in our range of age can truly understand what it's like,” she said in an interview with CURE. “I see my healthy peers going on and building their lives like they want. I feel like I'm trapped in a gluey substance that slow me down and keeps me from evolving, and I am alone in this.”
But, Rigon found “a lighthouse in a stormy area” in Stupid Cancer’s recently-launched app, which was developed in conjunction with GRYT Health — a digital health company founded in 2016.
The app, simply named “Stupid Cancer” is available for free download to smart phones.
“I can talk to people my age with my exact same disease who are living the same physical and psychological side effects and consequences,” she said. “They know how I feel. They say ‘I get what you mean’ instead of ‘I'm sorry for you.’”
The app allows users to create a profile with their first name, age, diagnosis, treatment stage and a brief “about me” section where they can list interests, hobbies and passions. Users are then anonymously matched by age, diagnosis and location.
The app, which launched Oct. 2, already has more than 500 users. The developers expect that number to quickly grow, as Stupid Cancer has more than 3 million people worldwide as a part of its community.
“Our team is the first to involve AYAs in the research process and build a product around their unique preferences and expectations,” said Dave Fuehrer, co-founder and CEO of GRYT Health. “The convenience of a mobile app and the user experience of The Stupid Cancer App, are a direct result of what adolescents and young adults with cancer said they want.”
Fuehrer told CURE that he wished an app like that existed years ago, when he was diagnosed with testicular cancer during his senior year of college. Five years later, he was diagnosed with another form of testicular cancer.
“It was terrifying. But what made it harder was how alone I felt. I never saw another person who looked anything like me or could relate to what I was dealing with,” he said, mentioning that it took him eight years to find a fellow two-time cancer survivor who had similar struggles.
As a researcher by training, Fuehrer said that he “should have” been able to find someone else who faced the same problems, but he was too filled with shame to even ask.
Fuehrer kept that in mind when leading the development of the app, where patients and caregivers were involved in every step along the way.
“When someone feels overwhelmed by cancer, finding another person who understands exactly what you’re going through can change your world,” said Fuehrer. “For every single time that happens, on The Stupid Cancer App or anywhere else, I feel like my pain has a purpose.”