PML-JCV.info was created from a deeply personal experience.
My name is Luca. 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, and healthcare professionals 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.
This is Russell, long term PML Survivor:
“My early symptoms were slight weakness in my left hand and numbness. It was diagnosed as a pinched nerve. I then began getting headaches, stomach issues, and balance problems. I went to a neurologist, and he diagnosed PML. I then progressively got worse until I fell at my parents’ house and couldn’t get up. I was hospitalized and deteriorated very quickly. I had a spinal tap and brain biopsy, and both were inconclusive.
My HIV Dr continued meds and said hopefully if the meds controlled the virus, the PML would become manageable. I was put in a nursing home and given PT. I was unable to take care of myself and put on hospice care. They stopped my PT because the nursing home Dr told the insurance company that I was not going to survive. My HIV Dr tried to get me back on PT but couldn’t. I feel this is why I still have major issues with my left side.
A couple of months in the home I started showing improvement and my parents took me home. My mother fought to get me PT once I went on Medicare and I was able to improve to the point that I needed the wheelchair less in the home. Over the next 20+ years I continued to make strides and I now drive, live alone, and only use a walker when in public. I’m not going to say I wouldn’t change a thing because that would be a lie, but going through this made me realize how strong I am and what is important in life. I’m more in tune with my body and mind. I don’t stress out over everything, but don’t ignore what I feel is wrong. I’ve also realized the importance of friends that will listen to me when I’m scared and when I’m happy. This experience has been equal parts hell and self-discovery.”