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Survival guide for parents of children with Lyme disease
Practical strategies for families facing tick-borne illness
The CDC estimates that more than 300,000 people in the US contract Lyme disease each year. Twenty-five percent of them are from age 5 to 14. That leaves a lot of parents scrambling to get help for their suffering children.
Lyme disease can cause puzzling symptoms in children, including pain, fatigue, digestive upsets, learning disabilities, behavioral issues and psychiatric problems. The illness can be hard to diagnose, however, and Lyme-related controversies in the medical world complicate the picture even more. Parents often don’t know where to turn for assistance.
“This illness can be shattering to family life,” says Connecticut psychotherapist Sandy Berenbaum, LCSW, co-author of the award-winning book, When Your Child Has Lyme Disease: A Parent’s Survival Guide (Lyme Literate Press, 2015). “Parents must care for severely ill children and search for the right treatment, while earning a living and juggling other family obligations. It can be overwhelming.”
According to Berenbaum, finding appropriate medical care for their child is only part of the story. Parents also need guidance on coping with treatment (which can be highly debilitating), developing effective boundaries with people who don’t understand what the family is going through, advocating for the child’s educational needs and managing everyday family life.
“Many may also need the help of a mental health professional who is knowledgeable about the illness and the complex personal and family issues that can arise from it,” she says.
Berenbaum has counseled Lyme patients and their families for over 20 years, first in her practice in Dutchess County, New York, and for the past 11 years, in Connecticut. She has developed “responsive psychotherapy,” a unique approach to helping families overcome the challenges of Lyme disease.
Her co-author, Dorothy Kupcha Leland, brings the parent’s perspective to the book. In 2005, Leland’s then-13-year-old daughter became seriously disabled by what turned out to be Lyme disease. But, she says, it took doctors a long time to figure that out, allowing the illness to burrow deep into the body and became extremely difficult to root out.
Equally hard was dealing with the emotional isolation a family can experience at such a time, Leland says. "We felt very alone. But, in fact, we were part of a growing yet invisible group--families grappling with a disease that is largely ignored by the medical establishment."
Leland, who lives in northern California, is now a national activist with the patient advocacy group LymeDisease.org and writes the blog Touched by Lyme.
When Your Child Has Lyme Disease includes an extensive appendix, listing resources for financial assistance, advocacy and support groups, educational websites, and related books and videos.
Dr. Richard Horowitz, an internationally recognized Lyme expert from Hyde Park, NY, has written a foreword to the book. “Children with Lyme present specific challenges,” he states. ”Skillful emotional support and guidance, as well as an understanding of how to meet educational needs and manage day-to-day family life is essential in Lyme. We finally have that guidance in this book.”
When Your Child Has Lyme Disease is available through Amazon.com and other online retailers, in both paperback and e-book formats. Paperback: 978-0-9962243-0-7 $19.95; e-book: 978-0-9962243-1-4 $9.99. Available to the book trade via Ingram.
For more information, see www.lymeliteratepress.com.
About the Authors:
Sandra Berenbaum, LCSW, BCD, has a psychotherapy practice that focuses exclusively on Lyme disease patients and their families. In private practice for more than 25 years, Berenbaum is also Children’s and Mental Health Editor of The Lyme Times, is an advisor to Lyme Connection, and is affiliated with the Lyme Disease Association. She is a member of the International Lyme and Associated Diseases Society, the Council of Parent Attorneys and Advocates, and the National Association of Social Workers. Her presentations at both national and regional conferences have helped educate practitioners about how to work with patients who have Lyme disease. She lives in Connecticut.
Dorothy Kupcha Leland is vice-president of LymeDisease.org, a national patient advocacy group. She has organized educational conferences, testified before the California State Legislature and the state health department, and written Lyme-related articles for a variety of publications. She co-founded a Lyme support group in Sacramento, California, and gives tick bite prevention talks. Her blog, Touched by Lyme, explores the personal side of Lyme disease and how it affects individuals and families. She lives in Northern California.
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