Raising Awareness

I created this newsletter to share information and resources, to build a community of support, and to enable readers to learn to bloom. This learning can be extended to those we care for and about, too, including other parents.

When a dear friend recently told me about her son’s diagnosis with PANS/PANDAS, I knew I had to share information about it here. I know nothing about this condition (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), which impacts as many as one out of every 200 U.S. children (nearly 70% between the ages of 4-9). It’s thought to be brought on by infection that causes a young person’s immune system to mistakenly attack and swell the brain, resulting in extreme OCD (obsessive-compulsive disorder), cognitive challenges, sleeplessness and other disabling behaviors. What distinguishes PANDAS from autism symptoms or classic OCD is its sudden onset (sometimes overnight).

Tragically, a PANS diagnosis is so new and controversial that many pediatricians across the country haven’t even heard of the condition. This leaves countless children and their families to struggle for years in search of answers and treatment. Thankfully, Dr. Susan Swedo (National Institute of Mental Health) and Dr. Jenny Frankovich (Stanford University) are working to change this. Active parents have created the PANDAS Network to support other families. And October 9th has been designated National PANS/PANDAS Awareness Day.

 

I have witnessed my friend’s struggle with her son’s extreme behavioral changes and challenges, and my heart aches for families who experience this and search far and wide for the diagnosis and supports they desperately need. From what I’ve learned, this journey (if you can even call it that) is filled with tremendous anxiety, loneliness and misunderstanding. Today’s newsletter provides information and resources to reduce the stigma of a PANS/PANDA diagnosis. Please share it broadly to help increase awareness of this condition, research for treatments, and support for those it impacts.

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To learn more, check out these recommended resources:

• Q&A on PANS/PANDAS from Stanford University

• Facebook support group for parents, hosted by the Neuro-Immune Foundation

• Stories of success and recovery from the New England PANS/PANDAS Association

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