TOUCHED BY LYME: Filling library shelves with Lyme disease books
Michele Miller of Massachusetts used to be a librarian. So back in 2011, when her mother, Jeanne Cloutier, was diagnosed with Lyme disease, one of their first stops was at the local library to search for books on the topic.
“There was exactly one book about Lyme disease,” Michele remembers ruefully. “Just one book.”
Sadly, Mrs. Cloutier lost her battle with Lyme disease in 2013. In memory of her mother, in 2014, Michele and her husband Ken formed the Central Mass Lyme Foundation. The non-profit organization works to raise awareness of tick-borne illness, educate the public, and offer resources and guidance to Lyme patients.
Michele works in real estate now. But her “inner librarian” never forgot those missing Lyme books on the library shelves.
So, one of the foundation’s projects has been to provide information resource kits to libraries in Central Massachusetts. The photo accompanying this blog shows a selection of books recently delivered to a library.
So far, they have distributed kits to 33 libraries! They plan to do more, as funding allows.
(I’m honored to know that the book I co-authored with Sandy Berenbaum, “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” is included in the kit.)
In addition to books, the kits also contain a DVD, a Lyme symptom checklist, a magnet from the Central Mass Lyme Foundation, brochures, and a flyer for their upcoming educational conference, to be held on Saturday, September 23, in Worcester.
The night before the conference, there will be a special “meet the authors” event at the local Barnes and Noble Bookstore. Authors of Lyme-related books will include Dr. Neil Spector, Dr. Kenneth Liegner, Jenny Rush, Katina Makris, Dr. Nancy Fox, Lori Dennis and George Popovici.
For more information about the authors and both events, go to www.CentralMassLymeConference.com.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org
You are welcome to place my book Ticked Off on your shelves. I wrote about my unknown journey with Lyme disease
My hometown has these “little free libraries” all around. They’re boxes on poles in front yards where you can go up, take a book, leave a book. There’s no checking anything out, nobody knows who leaves what. I thought about buying a bunch of Lyme books online and putting them in there.
As a library director in Massachusetts, you may also want consider several things. Almost all libraries are members of a consortium of libraries. Most public libraries won’t want to skew their collection to one disease at the exclusion of others, but they can borrow titles from the whole consortium, so a couple of different books in each library may benefit the whole. Choose from credible sources. Ask about purchasing ebooks if your library has them — one copy may serve more than one library.
In Massachusetts, we recently completed STOP LYME, a grant project funded by the National Library of Medicine (the people who bring you PubMed and MedlinePlus). We sent out a binder of materials to a third of public libraries in Massachusetts, that included tick-borne diseases in the state, guidelines, state law, prevention tips, and a list of support groups. We bought ebooks and hosted a forum (search “Ick A Tick Nahant” to find it on YouTube). Many of the participating libraries created displays and programs of their own. Public, school, and hospital librarians are great resources — talk to them and see where they can help!
I am living proof that putting lyme books in libraries can help people struggling to find a diagnosis. The support group that did this had become inactive but their contribution to the library was there to help. Was struggling to understand why I suddenly had a whole raft of seemingly unrelated symptoms, and lyme was the only one that fit the picture, thanks to the books I found in the library.
Thank you for sharing my story. When my Mom was diagnosed with Lyme disease, I brought her to her public library and they had only one book on the shelf. Being a former librarian, I was familiar with the consortium but felt the need for each library to have their own resources. With a Lyme disease diagnosis, a library patron shouldn’t have to wait for a book to be delivered from another library. The quicker the resources can be presented to them, the better. Knowledge is power. Our foundation’s mission of raising awareness and educating are key.