The Southeastern PANS/PANDAS Association (SEPPA) is holding its 2018 PANS Awareness Walk at Lake McIntosh Park in Peachtree City, Ga., Oct. 6. The event opens at 9:30 a.m. and the walk starts at 11 a.m.
One purpose of the upcoming walk is to unite families across the Southeast that are dealing with PANS/PANDAS to share each other’s experiences and offer one another support. The second, and more pressing reason for the walk, is to raise funds so that SEPPA can continue its mission: working for children and families with PANS/PANDAS to expand access to timely, appropriate, insurance-based medical care in our region.
The event will be held at Lake McIntosh Park in Peachtree City. Families can arrive at 9:30 a.m. and the walk will begin at 11 a.m. There will be inflatables for the kids and a time to meet other PANS/PANDAS families from across the Southeast. There is no charge to participate in the walk or the activities of the day.
For families affected by PANS or PANDAS that would like to participate in the walk, they can register at https://secure.qgiv.com/event/seppawalk2018/ or at the park on Oct. 6.
It is estimated that at least 1 in every 200 children suffer from PANS/PANDAS (cited from the PANDAS Consortium). There are few providers in the Southeast that can diagnose and treat these conditions and many of those do not take insurance. That, combined with the fact that most insurance companies in our state exclude PANS/PANDAS from their policies and deny coverage despite the pleas by the physicians, leaves the cost of treatment far beyond the reach of many families.
SEPPA has plans to exhibit at all of the American Academy of Pediatrics conferences across the Southeast including the National Conference in November where over 15,000 physicians will be in attendance. Through these conferences, we will be able to put information about diagnosis, treatment, and research into the hands of thousands of doctors across both the Southeast region and the entire nation.
The fundraising goal set for SEPPA’s 2018 Walk is $50,000, and with the generous donations received so far, SEPPA is almost half way to their goal. SEPPA is asking the public to help them reach their goal by donating at https://secure.qgiv.com/event/seppawalk2018/.
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) are caused by infections that resulted in sudden neuropsychiatric symptoms including OCD, tics, aggression, anxiety, depression, developmental regression, sleep problems and more.
Depending upon the severity of symptoms and triggers PANS/PANDAS is treated using multiple approaches that vary from behavioral therapies to antibiotics, steroids, and psychiatric medicines. In extreme cases it may require immune-modulating therapies including IVIG.
Unfortunately, many PANS/PANDAS children do not get the help they need because of delayed diagnosis or because insurance companies choose short-term profits over doctor-recommended therapies. The protracted denial and appeal process of insurance coverage delays treatment for these children and puts them at risk of further decline and potential long-term disability.
These burdens are inevitably shouldered by the family and the state in terms of costs associated with social services, medical treatments, and education. In extreme cases, children may require long-term hospitalization in psychiatric hospitals.
By providing an early diagnosis and early intervention, the state could avoid these high costs, while providing a child with an opportunity for a healthy and happy childhood.
If you would like more information about this topic, contact Heather Ward, vice president of SEPPA by emailing Heather@sepans.org.
Heather Ward
Sharpsburg, Ga.
[Editor’s note: Heather Ward has worked as a graphics artist for The Citizen and Fayette Woman Magazine over a span of 20 years.]
