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November 2013
In This Newsletter
Kids at Risk!
LymeAid 4 Kids
Helpful Links
Lyme Case Maps
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Dear Friends,

 

As you know, children are at the highest risk of acquiring Lyme and families often have more than one child with Lyme disease. LDA created the LymeAid 4 Kids fund in 2004 and has given out close to $250,000 for uninsured children with Lyme. This year, thanks to many generous donors, LDA has money in the fund to award to those families in need. They can find information on the website and download a packet with an application for them and their physician to complete.

The "new" Lyme numbers from Centers for Disease Control & Prevention (CDC), an estimated 300,000 Lyme cases annually, only scratch the surface of Lyme's impact. The numbers are really not new but confirmation that Lyme is vastly underreported to CDC by a factor of 10─figures that are probably not inclusive of most people who are clinically diagnosed by their doctor and do not meet strict CDC surveillance criteria─ often used by insurers to deny Lyme treatment. The 300,000 cases bring us closer to actual numbers, valuable to gain attention, but not to conveying real suffering of Lyme patients, especially children.

 

According to LDA President Pat Smith, "Based on CDC's Lyme reported case numbers, LDA found that 37% of reported cases are children. Thus from 1990-2011, adjusted for underreporting, 1,590,449 children have developed Lyme. More children were probably clinically diagnosed and not included in that figure─ children who often develop chronic Lyme."

 

According to a new Columbia University Lyme study, based upon 10-fold underreporting and on 10% of newly infected and treated patients developing symptoms that persist for more than 6 months, "the actual incidence of new chronic cases (PTLS) is...30,000" annually─ many of them children, who often miss months/years of school and have their childhood destroyed. Showering, walking, talking, thinking can be a problem, and serious pain is a daily challenge.

 

Amy Tan
Author, Amy Tan
Early diagnosis and treatment are crucial to prevent development of chronic Lyme, yet parents often lack insurance coverage. The LDA created its LymeAid 4 Kids fund in 2004 with support from author Amy Tan, who has Lyme. LDA has distributed almost $250,000, and thanks to generous donors, LDA still has monies available. Applications can be found on www.LymeDiseaseAssociation.org.

 

In 1992, CDC presented findings of its study with NJ Department of Health on NJ school children with Lyme. According to Ms. Smith, then a board of education member, who worked with CDC to facilitate information gathering from school districts: "Of 64 students studied, CDC found the median duration of Lyme was 363 days; the mean number of school days missed due to illness, 140; the median duration of home instruction, 153 days; 78% of parents stated their children experienced grades decreasing during illness."

 

Two Columbia studies of children with Lyme provide insight into children's lives. One study documents 22-point improvement in IQ in a 16-year-old after IV treatment; another found children with Lyme had significantly more cognitive and psychiatric disturbances. Parents indicated 41% of children had suicidal thoughts; 11% made a suicide gesture. Cognitive deficits were found after controlling for anxiety, depression, and fatigue. Lyme in children may be accompanied by long-term neuropsychiatric disturbances, resulting in psychosocial and academic impairments.  LDA provided funding towards both of these studies.

 

Are you under 21 and without medical insurance coverage for Lyme disease?   Do you think you may have Lyme disease?  If you answered yes to both these questions, the Lyme Disease Association's LymeAid 4 Kids fund may help you.

 

* It can provide up to $1,000 toward diagnosis and treatment 
* It is available through any treating physician nationwide 

LymeAid4Kids Logo * It is simple to apply for

 

For further information check with your physician or refer to the application packet.

 

Application Package - 2013 Applications now being accepted

The LDA has spent 21 years fighting for you and your family, funding science and education for prevention and a cure. With your continued help, we will move forward to a time when tick-borne diseases no longer present a danger to our families, a time when, without apprehension, we can again enjoy the great outdoors. 

 

Sincerely,

 

Pat Smith
President
Lyme Disease Association, Inc.

ABOUT THE LDA: An all-volunteer national nonprofit 501(c)3, dedicated to Lyme disease education, prevention, research, and patient support. LDA has been accepted into the Combined Federal Campaign 2013 as an approved national charity for Federal Workplace Giving. It's a Guidestar.org exchange gold level member, recognized for transparency and is an Environmental Protection Agency PESP Partner. LDA offers its LymeAid-4-Kids assistance program and has funded over 93 research grants─ funded research has been published in 33 scientific journals.  LDA has provided 14 annual Continuing Medical Education Lyme & Other Tick-Borne Diseases conferences for physicians and researchers.