You may be asking yourself what exactly it is. PML stands for Progressive Multifocal Leukoencephalopathy. The majority of the population carries the Polyomavirus JC, which is known as the JC virus, and it normally lays dormant until a person’s immune system becomes weakened. This disease can occur in organ transplant patients, people undergoing chronic corticosteroid or immunosuppressive therapy, and people that have certain cancers, such as Hodgkin’s disease, lymphoma, and sarcoidosis. PML Disease most commonly occurs in individuals that are HIV positive. This disease affects the central nervous system and brain, often causing a misdiagnosis.
The symptoms can be similar to other diseases out there, which is why it is so hard to detect. The JC virus will cause lesions on the brain and begin to affect the nervous system. With PML disease there is no set way that it affects every person. It depends on which section of the brain it decides to affect that will cause symptoms. For instance, when it attacks the part of the brain that controls a person’s motor skills that person will lose the ability to walk or talk. Early symptoms may include a weakness on one side, blurred vision, fatigue, impairment of learned skills, confusion, disorientation, loss of balance, and a possibility of seizures. Symptoms can often be misdiagnosed as a stroke or other similar HIV related conditions that affect the brain.
The only effective way of properly diagnosing PML Disease is through a brain biopsy. The treatment of PML can be just as bad as retrieving the diagnosis. The treatment of medications was given through a shunt in the brain. Now it has been discovered that an aggressive anti-HIV therapy can possibly result in the remission of PML. If a person is misdiagnosed and does not receive the proper treatment, then their life expectancy will be one to three months. Because this disease is so rare and little is known about it more people have passed away than should have.
Single mother’s raising their children, such as Courtney Hewitt, have been misdiagnosed and did not receive the proper treatment. You can read Courtney’s Story in a new tell all book written by her loving father, Reginald Todd Hewitt. The book tells of all the problems they faced in getting a proper diagnosis and the right treatment for Courtney. There are doctors, including HIV doctors, out there that do not know about PML because it is a rare occurrence and because of this many people are losing their lives when they could be living longer with the correct diagnosis and aggressive treatments. I hope that as an individual whether you have HIV, cancer, have had an organ transplant or know someone who has or is suffering from any of these diseases you will educate yourself about this disease and read Courtney’s Story.
“When PML claimed m y daughter Courtney’s life, I began my personal quest to raise Worldwide Awareness! I thought to myself, how can one person could possibly accomplish such a huge task? That’s when I decided to write and share her amazing story with you all, the people of our World!”
-Reginald Todd Hewitt