“Pediculosis Nervosa”: A Blog by Deborah Z. Altschuler
Updated: Feb 18, 2019
In the Beginning…
I’m not the first to say it, but there’s little doubt that those of us who love to talk, but loathe writing, will say that getting started is the hardest part. Yet here I am, with lots to share from my years of work – challenged, but excited, to be writing for my first ever blog. My goal is to tell some of the untold stories of the NPA and its work, and share some of the motivations and insights I’ve gained on other matters from taking on the issue of pediculosis and being open to serendipity.
At the time of my first involvement in 1982, pediculosis was a strictly taboo topic. When I was first notified that my youngest son was infested with lice, I wasn’t even sure what they were talking about. His nursery school teachers not only made the discovery, but also made it clear to me that, and I quote, “We don’t have families like that here.” YIKES! This was my first experience with what I came to call “Pediculosis Nervosa,” which was later the name of my presentation for pediatric grand rounds at Detroit’s Beaumont Hospital in 1999.
The local nursery school experience with my son was a jolt – an uncomfortable beginning to a life’s work that has continued to evolve. There’s an endless list of the lessons that were learned through a combination of inquisitiveness, naiveté, camaraderie, and achievement. There were also challenging instances of shameful behavior from people we trusted but shouldn’t have, and real-life family tragedies experienced by those who were misinformed, if not victimized.
We started as Parents Against Lice (PAL), with predictably cute slogans and stationery with a hand-drawn header. But our existence as a local grass-roots organization was short-lived. We quickly realized that there were even more serious public health aspects to our work than we had initially anticipated. This realization highlighted the need to refer to lice infestations respectfully and consistently with the way they were referred to in communicable disease medical texts. “Pediculosis” is the medical term for an infestation of lice. In addition, we were hearing from and responding to people from all across the country. Accordingly, we changed our name and became the National Pediculosis Association (NPA). [It wasn’t that the NPA didn’t consider other public health challenges in the beginning. There was some discussion about whether or not the organization should focus on other pediatric pests, such as pinworms. But I took a one look at a textbook on the subject of worms and immediately knew that I couldn’t – and didn’t want to – cover them.]
Our first hard lesson in the process of being a nonprofit was how to raise money while avoiding conflicts of interest. Right at the start, one of the lindane manufacturers offered us a whopping $30,000 “educational grant”, which we declined. Going to the public for donations was equally challenging. People – especially those suffering from “Pediculosis Nervosa” – were averse to even hearing the word lice, let alone having their names associated with an organization dedicated to the subject. So our first fundraiser was a yard sale.
But the influence of the pediculicide industry was growing, along with controversy about proper lice treatment. Without accurate education and a national public health standard, head lice were becoming endemic. So the NPA made it its mission to conduct research and provide education to families and health care providers on how to protect children from the misuse and abuse of pesticides marketed as lice treatments.
In retrospect and in light of all that we have accomplished through the years, our choice of name may have been a bit of a misnomer. The NPA was never about lice, really – it was about advocating for the children who became infested, and about setting the highest and safest possible public health standards for managing pediculosis. Our basic premise was that, as a society, we should be able to protect children from both blood-sucking, communicable human parasites and from dangerous pesticidal treatments which were prescribed too casually and with insufficient warning of their risks.
This premise was the impetus for our slogan: “Because it’s not about lice, it’s about kids.”