Message from PANDAS Network Executive Director
In 2018, our community has lost three PANDAS-PANS-AE youth to death from misdiagnosis and inadequate early treatment. The devastation to these families is unspeakably difficult. The often long lasting, relapsing-remitting course of this illness is now being recognized. It is with deep sadness that I write this because the spectrum of illness is now unfolding and it is sobering.
The Consortium is presenting several research papers in 2019 that should influence
about P/P/AE and their
grave similarities. We will keep you apprised as they are published.
AS PAINFUL AS THIS IS TO SAY: Many of our youth have such severe anxiety that they express feelings of self harm.
We parents hear it and fear for their safety is constant.
Our community takes this with utmost seriousness and deep concern. PANDAS Network in 2019 is
on acknowledging and understanding how severe depression, OCD, anxiety impacts our children. We have asked professionals to create materials around this topic and we will share this with you soon. We must be candid about this truth and save lives.
When we began PANDAS Network eleven years ago as a handful of parents, the concept of Autoimmune Encephalitis was just being accepted (NMDAR enceph). The dividing line between AE and P/P is closing but there is still disagreement in the medical community -- we realize this. The Georgetown Conference (Oct 5-6) will address this and we will keep you apprised of the agenda as it is finalized.
Below are four items from our medical/support community acknowledging these tragedies.
1) Statement of Support
2) Resources for Encouragement
3) Rebuttal to Naysayers
4) Video from one mom to all of us
We are Warriors of Hope, Courage and Love and we will save lives. Thank you parents and doctors for fighting so hard. Thank you from my family to yours --- I am
indebted to this amazing community.
Sincerely, Diana Pohlman