EMPD Patient Profiles

Delve into the stories and experiences of individuals affected by extramammary Paget’s disease (EMPD). Within these accounts, you'll encounter insightful profiles of patients who have courageously navigated the challenges posed by this rare and often misunderstood condition. Some of these profiles portray individuals who continue to battle EMPD or have found successful treatments for EMPD while other profiles remember those who have passed on.

From their initial symptoms and the arduous paths to diagnosis, to their treatment experiences and the ongoing strategies for management, these narratives offer profound insights into the daily realities of living with EMPD. Through the sharing of these diverse experiences, our goal is to raise awareness, foster community support, and empower both patients and healthcare professionals in their collective efforts to combat this rare form of cancer.

Barry Humphries

Barry Humphries, an Australian icon renowned for his multifaceted talents as a comedian, satirist, and actor, left an indelible mark on the world of entertainment. Born in 1934 in Melbourne, Barry Humphries embarked on a prolific career spanning several decades, enchanting audiences with his unforgettable characters, notably the beloved Dame Edna Everage and boorish Sir Les Patterson. His sharp wit, boundless creativity, and irreverent humor garnered widespread acclaim and adoration, cementing his status as a cultural phenomenon.

Yet, in the twilight of his illustrious career, Barry confronted a formidable challenge in the form of inoperable extramammary Paget’s disease (EMPD). Reports indicate that Barry first noticed "something weird" with his testicles while showering. Despite his determination, Barry courageously battled this rare cancer for nearly three years until it tragically claimed his life. His valiant struggle against EMPD serves as a poignant reminder of the critical need for heightened awareness, research, and support for individuals grappling with this daunting condition. Barrys' enduring legacy transcends the stage, leaving an indelible imprint on both the entertainment industry and the broader community.

Sandy Fontan

Sandy Fontan, formerly a vibrant and active marathon runner, faced an unexpected challenge when she noticed a seemingly innocuous bump on her anus in 2013. Initially dismissing it as a hemorrhoid, Sandy waited over a year before bringing it to her gynecologist's attention. However, what she believed to be a minor ailment revealed itself as a rare cancer known as a subcategory of extramammary Paget's disease (EMPD) called perianal Paget's disease (PPD). Despite her initial shock upon learning the diagnosis, Sandy demonstrated remarkable resilience as the disease had already spread to her groin and lymph nodes by the time of diagnosis in 2014. Embracing a comprehensive treatment approach, Sandy confronted each recurrence of the cancer with unwavering determination and hope, underscoring the crucial importance of early medical intervention and the pivotal role of top-tier healthcare institutions in her ongoing battle.

Navigating the complexities of a rare cancer diagnosis, Sandy's journey with extramammary Paget’s disease (EMPD) was marked by both challenges and triumphs. Sandy's proactive stance and indomitable spirit were pivotal in her pursuit of effective treatment. Despite the uncertainties surrounding her prognosis, Sandy remained resolute in her commitment to facing each obstacle head-on, buoyed by the unwavering support of her dedicated care team and the assurance of receiving optimal care. Through her unwavering perseverance and advocacy efforts, Sandy emerged as a beacon of inspiration for others grappling with similar medical challenges, advocating for timely medical attention and underscoring the critical significance of early intervention in the fight against EMPD cancer. Sadly, Sandy passed away 10 years after being diagnosed with EMPD, leaving behind a legacy defined by strength and resilience.

Stephen Schroeder

Stephen Schroeder's medical journey commenced innocuously enough, with what appeared to be a typical case of jock itch. However, as time progressed, his symptoms evolved into something far more concerning, prompting worries beyond mere skin irritation. Despite assurances from medical professionals, Stephen's unwavering persistence in seeking answers eventually unraveled a startling revelation: his ailment was not the common affliction it was initially believed to be, but rather invasive extramammary Paget’s disease (EMPD), a rare form of cancer that had been misdiagnosed. This epiphany spurred Stephen into action, igniting a fervent advocacy not only for himself but also for others enduring similar symptoms, catalyzing a significant shift in the comprehension and diagnosis of this enigmatic cancer.

Motivated by his own challenging journey, which included enduring eight surgeries and two extensive skin grafts, Stephen embarked on a mission to elevate awareness and establish connections with fellow patients grappling with the same misdiagnosis. Through the creation of a comprehensive extramammary Paget’s disease (EMPD) website and online support group, Stephen has successfully reached out to over 700 EMPD patients in 45 countries, illuminating the often-overlooked symptoms of this rare cancer and empowering individuals to seek the appropriate medical attention. By courageously sharing his story and spearheading vital discussions and research about EMPD, Stephen not only illuminated the condition but also cultivated a profound sense of unity and fortitude within the EMPD community, showcasing advocacy in challenging circumstances.

Stephen's journey has been featured prominently in numerous articles, including "Doctors thought he just had jock itch. Then it spread." and "Hoping to find other patients, he revealed a cancer often mistaken for 'jock itch'." Furthermore, Stephen has played a pivotal role in advocating for EMPD research studies, exemplified by works such as "Patients’ Experiences With Extramammary Paget Disease: An Online Pilot Study Querying a Patient Support Group" and "Patient’s Experience With Imiquimod for Extramammary Paget Disease."