Diana Pohlman

Pandas Network

Video: Thoughts on PANDAS and Autoimmune Encephalitis

Founded in 2009, Diana has built PANDAS Network (PN) from the ground up by developing stakeholder outreach, marketing and collaborating with healthcare experts. PN has grown from the story of her one child* and the outstretched hand of another mother from Illinois that has traveled this path as well. Together, they discussed their paths from treatment to healing, which has now grown to thousands of families worldwide. In 2013, PN was honored to be chosen as a National Institute of Mental Health Outreach Partner. PN continues to be the leader in driving awareness of this emerging encephalitic illness (PANDAS/PANS). *Her second child also developed PANDAS and because of lessons learned from the sibling had a rapid treatment plan.

The primary initiative of PN has been to lead the investigation in early research of the PANDAS/PANS diseases with seed-money grants funded by families. This has proven to be a critical step in the growing recognition of this illness. Research from each Center of Excellence in the U.S. indicates that the blood–brain barrier is impacted by the autoimmune system in PANDAS/PANS—and this promises to open, forever, new pathways into brain science.

In Diana's Words: "My goal for 15 years has been to ensure both of my acute onset age 7 children (boy and girl) would be healthy into adulthood. In 2007, doctors felt they would "outgrow" PANDA; I wanted to be sure it was true. I followed a "cohort" of 200 PANDAS onset children as a "citizen scientist." This cohort is evenly matched boys and girls from onset ages 7~10, current ages 17~24. Due to lack of funding for research by the NIMH or any institution I did this to guarantee the safe outcomes for all our children. FINDINGS: At least 74 of these 200 of these youth relapsed mildly in between ages 17 to 24 with OCD, anxiety or various pandas-like issues when re-exposed to strep or other acute infectious episodes (mono, covid, pneumonia, etc). These youth healed quite quickly through vigilance and quick treatment with antibiotics or IVIG (one or two doses). Two discoveries: 50% will in fact "outgrow PANDAS" and 50% have not. According to strep experts this is typical with Rheumatic Fever and Sydenham Chorea disease models. Three young men with extremely lengthy strep histories (over 20 infections by age 10) - had the most severe relapses and require encephalitis treatment to remain stable. My goal is to prove to doctors and researchers that early childhood treatment to arrest the majority of psychological and neurological symptoms is paramount in order to secure a less intense autoimmune onset in young adulthood."

As executive director, Diana has driven the growth of awareness through the organization and support of national and international conferences (beginning in 2011 in California) to the latest 2022 collaboration with Northwell Health of NYC (Chaired by Dr. Souhel Najjar, Chief of Neurology) Understanding the Spectrum of Childhood Encephalitis including PANDAS/PANS and, the widely publicized Common Threads Among Post Infectious Autoimmune Diseases of the Brain (Columbia Univ. 2018) that was attended by 800 persons and received national media attention (Dateline, NBC News). Building community is the driving force of PN leadership in the field. PN will continue to lead in the expansion of interdisciplinary dialogue and partnerships with medical associations and nonprofit organizations worldwide.

Diana’s long-term goal is to wipe out the devastation of encephalitic illnesses like PANDAS/PANS, autoimmune encephalitis and Sydenham chorea and tie our community’s cutting-edge research into the growing revelations surrounding the crosstalk of the immune system and the brain.

Executive Director