Progressive Multifocal Leukoencephalopathy (PML)
A Celebration of Women
is here for the Women of our World, WE hear YOU!Below is just one letter received by the grieving father of our very own WOMAN of ACTION – Courtney Leigh Hewitt who died unnecessarily of the JC Virus activated, misdiagnosed and allowed the time to ignite the viral brain disease named PML. Below, you will read the cry and pleas of one more victim to this horrific, under estimated, under appreciated and disregarded disease that is caused by a virus that has been proven to be carried by up to 85% of our global society.
What is Progressive Multifocal Leukoencephalopathy?
Progressive multifocal leukoencephalopathy (PML) is caused by the reactivation of a common virus in the central nervous system of immune-compromised individuals. Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses. The disease occurs, rarely, in organ transplant patients; people undergoing chronic corticosteroid or immunosuppressive therapy; and individuals with cancer, such as Hodgkin’s disease, lymphoma, and sarcoidosis. PML is most common among individuals with acquired immune deficiency syndrome (AIDS). Studies estimate that prior to effective antiretroviral therapy, as many as 5 percent of people with AIDS eventually developed PML. For them, the disease was most often rapidly fatal.
With current HIV therapy, which effectively restores immune system function, as many as half of all HIV-PML patients survive, although they sometimes have an inflammatory reaction in the regions affected by PML. The symptoms of PML are the result of an infection that causes the loss of white matter (which is made up of myelin, a substance the surrounds and protects nerve fibers) in multiple areas of the brain. Without the protection of myelin, nerve signals can’t travel successfully from the brain to the rest of the body. Typical symptoms associated with PML are diverse, since they are related to the location and amount of damage in the brain, and evolve over the course of several days to several weeks. The most prominent symptoms are clumsiness; progressive weakness; and visual, speech, and sometimes, personality changes. The progression of deficits leads to life-threatening disability and death over weeks to months. A positive diagnosis of PML can be made on brain biopsy, or by combining observation of a progressive course of the disease, consistent white matter lesions visible on a magnetic resonance image (MRI) scan, and the detection of the JC virus in spinal fluid.
The Courtney Project
434 North Normandale Avenue
Orlando, Fl 32835
Dear Mr. Hewitt,
Thank you so much for your response! Somehow, it makes me feel better to knowthere is someone who totally understands the devastation and heartache ourfamily is currently going thru. I was told today that she is being started onIVIG treatment. They put her on Heparin yesterday evening; and were hoping toremove the catheter from her neck (where she had the plasma exchange treatments), but said her blood was too thin right now to attempt that.
Hopefully, they will get that adjusted and it can be removed.
To vent for a moment — it has been so discouraging and disheartening to me tosee how a large portion of the medical community has become so numb to the cryfor help from someone in need. I keep thinking if only ONE of the doctors (particularly neurologists) had just kept looking or even said, “hey..I DO NOTknow what is wrong with you BUT we are going to keep looking” monthsago….would she maybe, just maybe be better? If the radiologist had taken thetime to read her MRI correctly??? It was not until she had another fall that put her in the hospital that an ER doctor said something is not right..let’s gether admitted.. THEN we were so fortunate to get two Neurologists that WANTED tofind out what was wrong….they didn’t hesitate to get other doctors involved,then did another spinal tap and confirmed the JC virus. They did say the onlyway to absolutely be sure of PML is to do a brain biopsy, but I don’t believethat is going to happen. They have brought in an Infectious Disease Specialist also who seems very concerned and interested in finding the bestpossible treatment. It is just so sad to me that it took this long to finallyfind the right team of doctors. We even had to beg her EX-primary
carephysician in the beginning of all this LAST August, 2010 to have an MRI just to rule out a stroke. It has definitely been a battle we were not
I know that my mother is in a battle for her life and as a family, we will do anything and everything possible to help her. With all the technology today,it is still baffling that we still have such little knowledge of some things. So, off my soap box!!
Please feel free to share whatever I have said. I keep telling my mother thatshe could very possibly be the one that a treatment is going to cure and lookhow many other people she will be helping. The doctors keep telling her that they are learning from her.
Thank you for all the continued prayers… I do believe in the power of prayerand the power of positive thinking. I will continue to pray to the Lord that He will bless my mother and heal her.
Thank you again for taking the time to answer me. Sorry I get so “windy” in theemail…. a lot of stress, sadness, anger, and every emotion out there is within me right now. I know you understand.
Thank you and bless you for all you have done and are doing to bring awarenessto this dreadful disease.
Best wishes,Dianna Self
firstname.lastname@example.org (home email)615-400-3428 (cell)
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