PML-JCV.info was created from a deeply personal experience.
In 2015, I was diagnosed with Progressive Multifocal Leukoencephalopathy (PML), a rare and often devastating neurological disease caused by the reactivation of the JC Virus (JCV).
Like many people who receive this diagnosis, I found myself facing uncertainty, fear, and a lack of accessible information. Although medical teams work tirelessly to care for patients, many individuals and families affected by PML struggle to find practical guidance, personal experiences, and opportunities to connect with others who truly understand the challenges they are facing.
My journey with PML changed my life.
The disease left me with significant neurological disabilities and required a long process of adaptation and rehabilitation. Along the way, I learned that recovery is not a single event but an ongoing journey that involves resilience, support, determination, and hope.
As I searched for others living with PML, I discovered how isolated many patients and caregivers felt. Reliable information was limited, and opportunities to connect with a supportive community were rare.
This led me to create the international Facebook community “PML Survivors and Supporters,” a space where patients, caregivers, survivors, healthcare professionals, and researchers could come together to share experiences, exchange information, and support one another.
Over the years, the community has grown into a global network connecting people from many countries and backgrounds, united by a common experience with PML.
PML-JCV.info was created as an extension of that mission.
The goal of this website is to provide a trusted resource that combines scientific information, practical guidance, personal experiences, and community support.