Courtney's Story – What is PML?

 

What is PML…????

Progressive Multifocal Leuko Encephalopathy.

 Courtney Leigh Hewitt


 

PML  can also 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 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 mother’s 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! 

PML itself is caused from the JC Virurs, which is lying dormant in 85 to 90% of our World’s Population!!

 Since my daughter Courtney’s death, it has become my personal quest to Raise Global Awareness of this horrible virus!

I would like to share her amazing story with you and your viewers around the world in hopes of educating and raising this much needed awareness.

My daughter, Courtney Leigh Hewitt, died last year of a rare viral disease called PML…..so rare her doctor had never even heard of it.He called himself an Infectious Disease Specialist. Holding the report in his hand, turns her away……..only to die a short time after…… 

 

 Respectfully yours,

 Reginald Todd Hewitt

 434 North Normandale Avenue

Orlando, Florida 32835

321-388-1952

[email protected]

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Courtney’s Story : 

https://851.5b0.myftpupload.com/?p=20499  

A Father’s Cry For Awareness :   

https://851.5b0.myftpupload.com/?p=17983  

Courtney Leigh Hewitt October 22, 1977_January 13, 2009 :

 https://851.5b0.myftpupload.com/?p=16540 

 Karla M. Davis_Spokeswoman for PML Awareness,

Woman of Action: https://851.5b0.myftpupload.com/?p=18934

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