Courtney Project – “2013 PML Awareness & Research Benefit”, Nov 15

The Courtney Project

Not for Profit 501 c3- “2013 PML Awareness & Research Benefit

Friday, November 15, 2013

Time: 6:00pm until 10:00pm

Where: The Mezz 152 South Eola Drive Orlando

Description

You are cordially invited to an Education and Research Benefit for PML (Progressive Multifocal Leukoencephalapathy) a rare viral disease caused by a virus lying dormant within your body. PML can also occur in organ transplant patients, people undergoing chronic corticosteroid or immuno-suppressive therapy, and people that have certain cancers, such as Hodgkin’s disease, lymphoma, and sarcoidosis. PML disease most commonly occurs in anyone who has ever had the Chickenpox or has a weakened or compromised Immune System and affects the central nervous system and brain. The symptoms can be similar to other diseases out there, which is why it is so hard to detect.

The virus will cause lesions on the brain and begin to affect the nervous system and affects everyone differently. It depends on which section of the brain it decides to affect that will cause certain 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 an MRI and CT Scan or 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 mothers raising their children, such as Courtney Leigh Hewitt of Orlando, Florida 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, such as was the case with her own Infectious Disease Specialist!

PML is so rare and because of this many people are losing their lives when they could be living longer with the early 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 you put the three parts together “leukoencephalopathy“ means a disease of the white matter in the brain.

But what does that mean?

Simply put, PML is a serious progressive viral opportunistic infection of the brain’s white matter. The virus responsible for PML is one that most everyone has been exposed to if they have ever had the Chickenpox!

Did you know that this same virus causes Shingles?

How did we get this horrible virus?

Statistics show that 80 to 90% of the world’s population already has this horrible virus!