Between Jan 1, 1996 and December 31, 1997, NJ had almost 4000 newly reported cases of LD. These cases are only the ones that fit the Centers for Disease Control, CDC, criteria for surveillance. Many more people were actually diagnosed by physicians with estimates from some medical professionals indicating that the 4,000 reported cases represent only 1/10 the actual cases in NJ. NJ has traditionally ranked either third or fourth in the nation for reported LD cases, many of which are children.

78% of the parents stated that their children experienced a fall in grade point average during the time of illness, 79% experienced a decrease in the number of friends. A quote from the CDC study sums up the magnitude of the problem: “Perhaps the greatest costs incurred by the study children were the social costs of the illness and its treatment. Schooling and extra-curricular learning activities were seriously interrupted for most children; often, children spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports, and social activities. School performance of nearly all children fell, sometimes drastically, and in several instances was said to interfere with selection by colleges and universities.”

In NJ, school districts are required by 18A to train annually any staff members who work with children who have LD. There is a statewide curriculum that was prepared by the NJDOE and distributed in 1995 to all NJ districts entitled “Making a Difference: Lyme Disease Prevention Education Guide.” 18A encourages, but does not mandate, that districts in a high Lyme disease incidence area adopt the curriculum guidelines. For the most part, districts are unaware of the mandatory legal requirement for teacher training and unaware of this curriculum.

Teachers must utilize alternative instruction strategies such as testing orally, breaking up periods of instruction, taping books and lectures, and allowing extra time for assignments. Additionally, they must pay careful attention to students’ physical needs such as light and sound sensitivity and the need to get up and move around.

Parents need to work with the school and should not be intimidated by district officials. I have seen children who have missed years of school and been able to graduate with their peers, and I have seen others who have fallen behind and not finished. The difference is usually the parent’s involvement. And schools often will cooperate after they are in serviced and understand the severity of the problem.

Childhood is a time in which children should be giving reign to their natural curiosity and exploring the world, learning how to develop relationships with their peers, and enjoying life before they are burdened with adult responsibilities. Because of intense physical and emotional pain, Lyme children do not live life, they exist. Someone near and dear to me with Lyme wrote the following poem 4 years ago at age 16. It is entitled “The Eternal Nightmare.”

The Eternal Nightmare

We stand here...and wonder
why it is dark,
A haze covers our lives,
severing us from the world.
We search, grasp-there's nothing
to support us.
No longer do we laugh;
we cry only grown-up tears.
Our childhood is shattered, our
souls stung and wounded.
Will sun rays ever reach
the children with Lyme?