Friday, December 5, 2008

[EQ] Neglected Infections of Poverty in the USA

Neglected Infections of Poverty in the United States of America

 

Peter J. Hotez, Department of Microbiology, Immunology, and Tropical Medicine, The George Washington University and Sabin Vaccine Institute, Washington, D.C., USA

PLoS Negl Trop Dis 2(6): e256. doi:10.1371/journal.pntd.0000256 - 2008

Editor: Simon Brooker, London School of Hygiene & Tropical Medicine, United Kingdom

 

 

Website: http://www.plosntds.org/article/info:doi%2F10.1371%2Fjournal.pntd.0000256

 

“…..In the United States, there is a largely hidden burden of diseases caused by a group of chronic and debilitating parasitic, bacterial, and congenital infections known as the neglected infections of poverty. Like their neglected tropical disease counterparts in developing countries, the neglected infections of poverty in the US disproportionately affect impoverished and under-represented minority populations. 1

 

The major neglected infections include the helminth infections, toxocariasis, strongyloidiasis, ascariasis, and cysticercosis; the intestinal protozoan infection trichomoniasis; some zoonotic bacterial infections, including leptospirosis; the vector-borne infections Chagas disease, leishmaniasis, trench fever, and dengue fever; and the congenital infections cytomegalovirus (CMV), toxoplasmosis, and syphilis.

 

These diseases occur predominantly in people of color living in the Mississippi Delta and elsewhere in the American South, in disadvantaged urban areas, and in the US–Mexico borderlands, as well as in certain immigrant populations and disadvantaged white populations living in Appalachia. Preliminary disease burden estimates of the neglected infections of poverty indicate that tens of thousands, or in some cases, hundreds of thousands of poor Americans harbor these chronic infections, which represent some of the greatest health disparities in the United States.

 

Specific policy recommendations include active surveillance (including newborn screening) to ascertain accurate population-based estimates of disease burden; epidemiological studies to determine the extent of autochthonous transmission of Chagas disease and other infections; mass or targeted treatments; vector control; and research and development for new control tools including improved diagnostics and accelerated development of a vaccine to prevent congenital CMV infection and congenital toxoplasmosis…….”

 

 

 

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1 comment:

Lisa Saunders said...

I am the parent representative of the Congenital CMV Foundation and just spoke at the international congenital CMV conference held at the CDC. This is my third holiday season without my daughter. If you want to know about my daughter's life and death from CMV related causes, please read my Christmas story below:
Elizabeth: A Christmas Blessing--Even Now

Expecting our second child, due to arrive Christmas Eve of 1989, had been a delightful experience. What a Christmas present! But the moment Elizabeth was born, I felt a stab of fear. My immediate thought was, "Her head looks so small--so deformed." Before she was twelve hours old, I found out why.

When the neonatologist entered my room the following morning, he said, "Your daughter has profound microcephaly--her brain is extremely damaged throughout. If she lives, she will never roll over, sit up, or feed herself."

He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV) — a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms.

The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies a year are born with or develop permanent disabilities because of congenital CMV. It is the #1 viral cause of birth defects--more common than Down syndrome.

How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it because it is frequently being shed in their saliva and urine. Pregnant women need to avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed thoroughly, especially after wiping runny noses, diaper changes and picking up toys that have been in a toddler's mouth.

While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

"My life is over," I thought. I asked God to heal her instantly, but since He didn't, I begged him to kill me and prayed to be crushed to death in an earthquake or struck by lightening. I just couldn't handle raising such an afflicted child, period. Although children are supposed to be a blessing, I felt far from blessed--I felt stricken.

Thankfully my husband Jim's love for Elizabeth far outweighed his grief. He said, "She needs me. I want to protect her from this cruel world she has been born into." He was just like Charlie Brown with that pathetic Christmas tree.

"Oh God," I prayed, "please help me love Elizabeth too."

We took Elizabeth home Friday morning, December 22. Although Elizabeth was no longer at death's door, my horror over her prognosis had not left. But I had to fight through it; Christmas preparations needed to be made. Christmas had not turned out as hoped.

Initially, whenever I looked upon Elizabeth, my heart broke afresh--all I could see was her prognosis. It was as if the prognosis was more of a person than she was. This "prognosis" was like a living creature relentlessly torturing me. I couldn't seem to get past it and see Elizabeth for the sweet little girl she was.

In those early months of Elizabeth's life, it seemed all I could do was rock Elizabeth and read the book of Psalms. Many of the psalmists wrote things I wouldn't dare say to God. They questioned His love and power, thus helping me to honestly express my grief to Him. I could relate to the writers' pain and feelings of abandonment as they waited on God's deliverance. Knowing I wasn't the only one despairing of life made me feel less alone in my anguish.

Elizabeth loved to be held--something my first-born daughter Jackie never enjoyed. Elizabeth resting contentedly in my arms was beginning to bring me pleasure. One day, she looked directly into my eyes and smiled. I was hooked! I stopped asking God to kill me. Like George Bailey standing on the bridge at the end of the movie, "It's a Wonderful Life," I too began to cry, "I want to live again!"

Sixteen years later, I awoke feeling so proud. It was Elizabeth's 16th birthday and just one week before her 17th Christmas. Listening to nostalgic songs like, "I'll be home for Christmas," I thought about how hard Elizabeth fought to be home with us for yet another Christmas--overcoming several battles with pneumonia, major surgeries and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy young lady with a love of adventure — long car rides to look at Christmas lights being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of "normal" children who thought that, like Rudolph the Red-Nosed Reindeer, she belonged on the Island of Misfit Toys.

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today." She smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" With that, I left.

At the end of the day, I got the call I had always feared. "Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."

The medical team did all they could, but she was gone. While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as Elizabeth did. Although I was happy that she was free from her body, I knew it might be a very long time before we joined her in her new Heavenly home.

Now, as I prepare to celebrate my third Christmas without Elizabeth, it is with some heartache that I lift the holiday decorations from their boxes. Elizabeth used to love to sit on the couch with her big, old dog Riley, and watch me decorate. But I have found a way to include her in our Christmas traditions: I open Elizabeth's drawer and pull out the black and red checked shirt she wore on her last day with us and hang it over an empty chair placed beside the fireplace. I think of her as my little "Tiny Tim" who would say to us if she could, "God bless us, everyone!"

In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, "Anything But a Dog! The perfect pet for a girl with congenital CMV." It is not only the crazy account of trying to find the right pet for both daughters, but it also raises awareness of congenital CMV--I don't want there to be another parent who cries, "No one is ever going to look at me this way again," because their child died from this largely preventable disease. Available through the National Congenital Disease Registry, "Anything But a Dog!" raises funds for congenital CMV parent support, research and awareness if purchased through: http://www.unlimitedpublishing.com/cmv/

Thanks for reading about Elizabeth!

Lisa Saunders, Suffern, NY.
www.authorlisasaunders.com