Chronic Lyme Awareness and Support
"Ribbons Across America"
S.L.A.M.
Sturbridge Lyme Awareness of Massachusetts
http
S
S
httphttp: //www.metrowestdailynews.com/opinions/letters_to_the_editor/x1990774259/McCleary-Push-for-better-Lyme-treatment
://www.lymedisease.org/news/touchedbylyme/714.html CALDA blog/SLAM Billboard May 2011
http://www.telegram.com/article/20110512/FLASH/105129602 May 12, 2011
http://www.theheartofmassachusetts.com/pdf/SOU.2011.05.04.pdf May 4, 2011
http://thetantasquatowncommon.com/flipbooks/tc04.28.11 /pageflip.html
http://www.metrowestdailynews.com/news/x1294651967/Cases-of-Lyme-disease-handled-inconsistently April 27, 2011
http://www.theheartofmassachusetts.com/pdf/SOU.2011.03.02.pdf - Southbridge Evening News article March 2, 2011
S.L.A.M HAS RECEIVED CITATIONS FROM BOTH THE SENATE AND HOUSE OF REPRESENTATIVES FOR THEIR EFFORTS IN "LYME DISEASE AWARENESS MONTH"
http://www.theheartofmassachusetts.com/pdf/SOU.2011.07.15.pdf July 2011 article
Getting Involved
This realization pushed both my husband and me into overdrive with a goal of spreading the truth about Lyme to everyone we know, and everyone they know. In our mission to raise awareness, we joined a local Lyme awareness group, Sturbridge Lyme Awareness of Massachusetts (SLAM) and began our lives as “Lyme Disease awareness activists.” We came to realize that raising awareness is really a task of education – educating the public about the realities surrounding prevention, symptoms, proper diagnosis, treatment, and the misinformation being fed to us by the mainstream medical establishment and government agencies. It means being ready to share information at any opportunity, be it a support group, the request of the Boy Scouts to make a presentation, or the casual interactions that occur at any community function or social event.
One opportunity that is virtually untapped is the one to educate our children with a goal toward prevention, prompt diagnosis and sufficient treatment early on. One of the best teaching tools we’ve found is Time for Lyme’s (TFL) multi-level school curriculum. It offers information about the disease that is appropriate for all levels, from kindergarten through high school, including instructional DVDs for teachers and students. CDC representatives in the videos acknowledge the gaps in testing and diagnosis, and prevalence of the disease in the U.S. The fact that it is narrated by a respected actress, Meryl Streep, grants some credibility. The challenge, of course, is how to go about getting a school system that doesn’t even know there’s a problem to see the curriculum as deserving of attention in an already packed academic schedule.
The Process
In our case, a fortunate connection with the high school health teacher in our district made it easy to broach the subject. We told her that we had purchased TFL’s curriculum and discussed the possibility of doing a presentation at one of the district’s community health nights. Having had some experience with students affected by Lyme, she agreed to review the curriculum for potential inclusion in the program. While the health teacher found the curriculum to have merit, this initial effort did not yield our desired result because it was late in the school year, and the curriculum for the community health program had already been established.
A more comprehensive approach was required. We solicited the school nurses in each of the five elementary schools in our district, as well as the junior and senior high schools. We presented them with a copy of the curriculum along with informative brochures from various Lyme awareness organizations. They appeared receptive, but for the most part, nothing came of this. The reality was that they were not the decision-makers. Our discussions did prompt some of them, however, to include Lyme awareness information in a parents’ letter that went home with the elementary school students each week - a step in the right direction.
Our next step was to approach the elementary school principal in our town, with whom we had a friendly relationship. Again, she was receptive but not in a position to implement. The decision needed to come down from the school superintendent. Therefore, we approached the assistant to the superintendent and she, fortunately, was very receptive to the idea. The reason? She had a family member with Lyme and as a result was painfully aware of the severity of the illness. At the assistant’s urging, along with the stamp of approval from the high school health teacher which added credibility, the TFL curriculum was approved for inclusion at all levels in the entire school district. Furthermore, our willingness to donate the curriculum (a mere $60) expedited the process by eliminating the requirement to seek financial approvals. Frankly, I’d say it’s the best money we ever spent.
By implementing the TFL curriculum in our school district, we are able to raise awareness about Lyme with our children, and promote up-to-date accurate information in the population with the highest incidence of the disease (5-15 years). For our school district, this is 3800 students. Students of all ages and their parents will now be better equipped to protect themselves from Lyme and to advocate for themselves and loved ones should they be diagnosed with it.
An added plus - we’ve also found that the 20 minute elementary school level DVD included with the curriculum as an excellent substitute in Lyme awareness presentations for the longer film Under Our Skin when time is limited.
Tips for Implementing a Lyme Curriculum in Your Community
1. Find a sympathetic ear (or two) within the school administration. Look for opportunities to have casual conversations about the disease – especially the common misconceptions. More than likely, at least one person, if not many of those you encounter, will have a family member or friend who is battling Lyme or one of its many misdiagnoses. Find common ground with these contacts – knowing that they may have similar motivations as you so spread the word. Furthermore, know your material and work to position yourself as a go-to person for information.
2. Don’t give up. A “no” answer today may change to a “yes” six months from now as people in positions of power inevitably are touched by real life stories. Be pleasantly persistent, but not confrontational. Offer yourself as a resource.
3. Keep in mind that implementation of a program such as this is a process. It is necessary to go through certain channels. It is also necessary to make contact with key influencers who can push your request through. In our case, the superintendent’s assistant played a key role, as did the high school health teacher and one elementary school principal. They were receptive to the idea, had personal knowledge of people who have been affected by Lyme, and were in a direct contact with decision-makers. Had we not communicated with them first, we may have met a road block at the superintendent’s door.
Awareness about Lyme Disease is growing every day. Our experience has taught us that with a little patience and a lot of ingenuity, it is possible to make a significant impact in our communities. Together, we are making a difference.
