Grass Roots Efforts

I have started reading Malcolm Gladwell's book, David and Goliath. It begins by describing the biblical story of the shepherd boy, David, taking on the challenge of the giant Goliath. Gladwell then dissects the hypothetical reasons that led David to beat the odds with a simple slingshot. According to Gladwell, the fight wasn't just between strong and weak, but between overconfident/possibly medically disabled (Goliath) and cunning/different type of fighter (David.) David defeated Goliath because he didn't fight in a way that was expected.

And really, David had everything to lose by fighting Goliath in hand-to-hand combat. David had nothing more to lose by using his simple slingshot. Everyone already expected David to succumb.

There are lessons here for us. How do we use this knowledge as we involve ourselves in efforts to take PANDAS legislation to the state and national levels? How can we learn from the successes and defeats of Lyme and Autism warriors who have attempted to do the same? How do we become a different type of fighter? 

I'm not a politician. I'm a teacher, a writer, and most importantly, a mom. A mom of two children who both have Lyme Disease. A mom who has Lyme Disease. A mom of a son with PANS/PANDAS. And a wife to a husband who contends with his own autoimmune disease. I want to badly to effect change, but I am just one person, and one without a resevoir of energy. Many of us are in simlar positions. And that's why we need each other.

In Massachusetts, parents have united to push for legislation that will enable children suffering from PANS to receive IVIG. In Hartford, Connecticut, doctors, school nurses and parents are participating in a PANDAS Advisory Council to create legislation that will aid in PANDAS/PANS awareness across the state. I am hoping to pull together a core of people who can continue efforts in the state of New York. 

Even as a PANS/PANDAS community, we are often divided. Some PANDAS doctors or scientists have quite stringent qualifications for PANDAS, wherein you must know the exact day and hour that your child flipped. Other doctors have hypothesized that PANDAS can look quite differently depending upon the age of the child at onset. Some kids with PANDAS also have Lyme. Some don't.

At the PANDAS conference in November, one of our doctors (I believe it might have been Dr. Jones,) said that we need to be "lumpers, not splitters." No matter the age of onset, no matter the symptoms, no matter the diagnosis, we must work together. How do we put aside our differences in order to fight for more PANDAS and Lyme awareness, for legislation to protect our doctors and funding for proper treatments?

As Lumpers, we need to align ourselves with other people who suffer at the hands of our medical system because of misunderstandings and lack of information. The case of Justina Pelletier is just one devastating example of this. Another example of a misunderstood disease is Anti-NMDA receptor encephalitis, which is the subject of Susannah Cahalan's book Brain on Fire.

And without being too political, because I haven't had the time or energy to read up on the changes in health care laws, how will Obamacare affect those of us with oft-misdiagnosed or misunderstood, under-researched diseases? Already, insurance doesn't cover many of our medical bills. Will this get better in future years...or worse?

Battling the medical system head-on might not be the answer. Too many doctors do not yet acknowledge PANDAS. Others refer to it as a "rare disease." Dr. Susan Swedo made headway for PANDAS in her debate with the American Academy of Pediatrics this year. But she's one person. There are many of us parents out here. And time is ticking by.

For years, people suffering from Lyme Disease have struggled with the CDC which, until this year, maintained that only 30,000 people a year in the USA get Lyme. (This year, they acknowledged that 10 TIMES that number of people get Lyme annually. The real number is most likely much greater than that.)

One thing that everyone can do is to support journalists like Neil Swidey (Boston Globe,) Beau Berman (Fox News) and Mary Beth Pfeiffer (Poughkeepsie Journal,) who bravely expose the stories of these invisible diseases.

Perhaps we are outliers of society, those of us who must deal with these diseases. My son nicknamed those of us who are sick, "Immortals," (vs. Mortals,) citing the Greek gods of long ago. 

Back to Malcolm Gladwell. Perhaps, in our struggles with these illnesses, we outliers. According to Gladwell, outliers can be successful people. Like David, we need to empower ourselves. We need laws that will guarantee medical legal rights for our families. We need to find our weapon of choice. We need to find a united voice.

This is a fight worthy of our time and effort. What is needed for success? A slingshot. Guerilla tactics. A smarter way.

Help wanted. The time is now.