Joseph Kamp
Lyme, Teens, and Educators
December 10, 2004


I want to thank Pat Smith for the introduction and Leslie and Lauren Giardiello, who have put a great deal of work into tonight's benefit. I also want to thank all of you who have come out tonight to give your support. I will apologize in advance for any errors in words or thoughts, but, we all do have Lyme Disease.

I have been asked to speak here today because of my own experiences with Lyme Disease. I will be speaking about the impact of Lyme on students and educators. But, before I begin, please consider the following. There are school-aged children with Lyme almost everywhere. Any place that Lyme exists, there are children affected. When a young person gets Lyme Disease, their symptoms are varied and complex. I could spend all my time here today just discussing these symptoms, but that is not what I came here to do. What I will discuss though, is that almost every child with Lyme Disease has issues in school. Whether grades are slowly dropping, or whether a child is becoming more fatigued and unable to concentrate or take part in activities, children with Lyme Disease have issues in school. Many students with Lyme Disease cannot go to school every day, it is just too much for them to handle. They miss work, classes, and activities. When these kids get back to school, they struggle to make up missed work and often are unable to catch up, they struggle to maintain healthy relationships with their peers. Teachers and Administrators do not understand what is going on with these students. They can only guess and take what the parents say as fact. Many Teachers and Administrators haven't heard of Lyme Disease causing all these problems. Parents and Students alike become frustrated. The Parents are frustrated because their child is missing school and missing opportunities; the students because they are losing time they cannot get back, and losing friends in the process. This situation needs remedying.

Most everyone in this room either knows a student, is the parent of a student, or is a student with Lyme Disease. If not, then you will surely meet some soon. Some of us are lucky to attend schools that understand the problems Lyme Disease can cause and are supportive of students. Other schools, even in severely endemic areas, are very unsupportive and even hostile toward sick children. How can this problem be fixed? Well, there are the disability laws that require schools that receive federal aid to provide students with support but not all schools abide by these laws. And what about the private schools that receive no federal funding and do not have to conform to these laws? I believe the answer is not in twisting the schools' arms and making them comply, but rather in educating the educators, and showing them what Lyme Disease can do to students. Seminars and teacher in-services could act to educate the schools and show them how to cope with these students in a way that is beneficial to all parties. Who should be giving these in-service seminars to the teachers and school administrators? Well, to begin with, the Lyme Doctors in the communities can begin to speak to school officials, and it is also important that properly informed parents and community members take part in helping urge the schools along. Similarly, students who are willing to speak out about their experiences with Lyme Disease can be a great help. The schools then aren't being forced to comply with a law, and the students can then get an education. Some remedies that can be useful to help Lyme Disease infected students are late arrivals and early dismissals, course load lessening, extended time for tests and assignments, tutor support, and support groups at the schools themselves.

Getting up in the morning is a chore for anyone, but it is almost impossible for Lyme patients. Schools start early, some as early as 7:00 in the morning. It cannot be expected of Lyme patients to be up and functioning at that hour. My own school requires that students be at the school at 7 AM, which means I would have to get up at 6:00, if not earlier. This just cannot happen in the mornings. If school were to allow late arrival times for students with Lyme Disease, students could get up at a time that is more reasonable for them. A time that allows them to get the rest they need to recover. There have been many days that I myself was unable to get to school at the required time, but if a late arrival time had been was set, I would have been capable of making it in. Early dismissal time is another option for students with Lyme Disease. A school day is a long day for a Lyme patient and shortening it allows for more rest and prevents crashing from overdoing it. Several times, I would force myself to put in a full school day, but then that effort would knock me down for several days afterward.

Then there is all the academic work that school requires. In some schools, even healthy students cannot keep up with the course load. How is a student with Lyme Disease and cognitive dysfunction going to handle all that? A full course load is just too much work for most students with Lyme Disease. Lessening of the course load will aid students with Lyme Disease to get more meaningful work done in the classes they are taking and allow time for rest. Last year, I was absent for nearly half of the time. Somehow, I was able to maintain a full course load that included two advanced placement courses. At the beginning of this school year, I was enrolled in seven challenging courses, three of which were at the advanced placement level. But, due to setbacks in my health I have been unable to keep up. After negotiation with my school, I will be dropping those courses not required for graduation. All I need is one History and one English credit. All other courses, while fun and educational, are unfortunately going to be dropped for this semester.

Extended time for test taking and allowing assignments to be handed in with more lenient restrictions on due dates is very beneficial to all students with Lyme Disease. This is due to their often significant cognitive dysfunction, which interferes with their ability to do their schoolwork. Extending time limits for test taking and assignments, not only reduces the stress placed upon students with Lyme Disease but also allows them to complete work when they feel well enough to do so.

Home tutoring is another option that schools can use to provide an education for Lyme students. Even with the remedies I already discussed some students just still cannot make it into school. These students would require home tutoring in order to maintain an education and complete a year satisfactorily. This can be expensive for those students who attend private schools, which are not required to uphold the disability laws. Public schools are required to provide this service by law. It would be best if all schools could provide this option, considering the tuition price for private education.

The last remedy for students with Lyme Disease is one that is not required by the disability laws and may not often be considered by educators. In almost every school, there are support groups for anger management, peer problems, drug problems, anything, and everything. What isn't there a support group for Lyme Disease? In this group, students will be able to get together and talk with others who have Lyme Disease. They can gain moral support, and also learn about ways to cope with school and Lyme Disease at the same time. Perhaps they will also get tips for coping with medications and Herxheimer reactions. This could also be a place where those students who suspect they have Lyme Disease could come and get answers for themselves. The Lyme Disease Association of South Eastern Pennsylvania's LymeTeens Forum on Yahoo©, Inc., is a great place to exchange stories, ideas, and receive emotional support from others. This idea could easily be translated into a school setting.

Think back to the frustrated parents and child I alluded to earlier. Often neither students, parents, or schools have an idea what is going on. If these proposed changes were made, those children would be able to be students on a schedule that is both physically and mentally possible. This can only happen if the educators are educated about Lyme Disease. For this to occur parents and students alike must become as active as possible in opening the school community's eyes to what Lyme Disease really is. While this will not be an overnight change, it is a change that must occur, just like getting recognition for Lyme Disease from doctors and insurance companies. As recognition of the devastating effects of Lyme Disease grows, the schools must be included in order for children to get the help they both need and deserve. Thank you.