I believe that in 10 years from now, the world of PANS/PANDAS will look very different. Information will have trickled down into the medical machinery and more children will be diagnosed by a greater variety of front-line providers more quickly. The earliest batches of research data will have been published and beginning to be applied and studied as treatments and diagnostics, maybe even a cure by then.
Unfortunately the world is cutting its teeth on our children. That is why it is up to each of us individually and all of us collectively to be bold and intelligent and informed and even brazen when it comes to demanding care, educational accommodations and insurance reimbursement for our children.
Even though we are exhausted, we have to keep going forward.
Alone I may feel powerless but together we are powerful and visible and way more courageous. Parents who advocate for their PANDAS children have been called anxious, pushy, annoying, hypochondriac, in denial. We have had several parents designated as suffering from Munhausen by Proxy syndrome - a rare mental illness where parents purposefully make their children sick or sicker for their own personal gain and need for attention. Imagine that!! Doctors would rather blame the mom than get off their myopic butts and actually think about what might be happening with these very sick children.
At the Indiana PANDAS Parent Meeting, we created a large group of parent advocates, a way to harness our collective energy and send a powerful organized message to accomplish a specific goal. We chose as our first task a collective effort to get the long-promised NIMH "White Paper" pushed forward. Over Thanksgiving week last year, our 40+ member advocate group along with dozens of parents from PANDAS blogs and Facebook groups sent emails to those involved in publishing the paper, and within a very short period of time that paper was out. I don't think this was a coincidence.
We will continue to organize and focus and take our message to the powers that be, those that keep a lock on the research funding streams and information networks and medical education and insurance reimbursement.
Every day parents are taking large action - making websites, videos, publishing articles and books; standing up in front of groups and talking about PANDAS / PANS. There is momentum in the world of PANDAS awareness. We just have to keep going.
