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PANS/PANDAS Awareness Day 2019

10/10/2019

On Wednesday, October 9, patients, families and healthcare providers will came together across Arkansas and the US to raise awareness and spread understanding of PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). House bill HR 1030 was established in 2017 recognizing this day through a State Proclamation. 

A local event was held at Saline Memorial Hospital in the Health Education Building to spread awareness and acknowledge the need to educate the public and medical community about these autoimmune disorders.

PANDAS is a serious, complex autoimmune disorder that can affect people, (primarily children) when a strep infection triggers a misdirected immune response, resulting in inflammation of the brain. The disorder is characterized by a sudden onset of neuropsychiatric disorders, including severe anxiety, depression, OCD, behavioral and learning regression, facial tics and more. If strep cannot be linked to the onset of symptoms, PANS caused by a different infection should be considered.

According to the CDC, it is estimated that 13-20 percent of children living in the United States experience a mental disorder in a given year. It is also documented that 1 in 200 children are affected with PANS/PANDAS. 

“Finding the root cause for these symptoms is imperative,” said Matt Brumley, director of the Saline Health Foundation. “If the onset is a result of PANS/PANDAS, a person can possibly be saved from a lifetime of suffering.”

The Saline Health Foundation became involved in 2016—by helping spread awareness, making education more readily available and advocating for accessible diagnosis and treatment.

After collaborative efforts with law makers and community members, House Bill SB252 was written into Arkansas Law on March 29, 2019. This bill ensures insurance coverage for treatment of PANS/PANDAS.

“This all started with awareness,” said Brumley. “Our hope is the more that are aware, the more will receive help,” said Brumley.

The community is invited to Saline Memorial Hospital Health Education Building Atrium on Wednesday, October 9, at 10:30am to recognize this cause and hear from affected families. They will also conduct a Facebook Live Q&A at Noon on the Saline Health Foundation Facebook page. A local health provider will take live questions and discuss symptoms, diagnosis and treatment. 

 “We will gather together and hear from affected families and discuss the collaborative efforts put forth by State Legislators, Healthcare providers (or organizations) and concerned community members,” said Brumley.

For more information, visit the Saline Health Foundation Facebook page or salinehealthfoundation.org.
Thanks to THV11 for sharing Max's and Jayden's stories about suffering with PANS/PANDAS, and the hope research and treatment are giving many in our community. Watch the full story at https://www.thv11.com/video/news/health/pandaspans-awareness-saves-kids-life/91-1ae4e4be-686e-4fb9-91be-9981866eda8b?jwsource=fb&fbclid=IwAR11aHBqrqmMK-H_EwzcefqOq6MYMk0vRMi8ty2Aiy5ud1Bxd-sOoMnKEQY

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