The SANE 2019 International PANS Conference took place October 3 and 4, 2019, in Malmo, Sweden, the third largest city in Sweden, just 30 min north of Copenhagen. The organizers of SANS Sweden, a parent-led support/education outreach group based in Stockholm, obtained grants from Sweden and spent 3 years organizing this 2-day conference of professional and parents - over 350 total. It was both refreshing and sad to see that families’ stories of PANS affecting their children were very similar among attendees from Sweden, Denmark, Italy, Germany, the UK, Canada, and very similar to those I have heard over the years in the US. It was clear that we were all speaking the same language - that PANS/PANDAS exists, hits quickly, and often hits hard. The conference allowed for meal times for professionals and parents to mingle and discuss - I had many long discussions with attendees about their experiences in getting a diagnosis and proper treatment - some having to fly to the US. Many are still looking for a treatment team. One thing I noticed was that corticosteroids appear to be used much less in Europe than in the US. Rather, IVIG is seen as one of the primary treatments of PANS. The health care system being universal and covered by the government made it both easier and more difficult to obtain IVIG - use was closely monitored, but at least when able to be obtained, treatment was free.
The professional presentations included data and discussions regarding autoimmunity in autism (Richard Frye, M.D., Associate Professor, Arizona Children’s Hospital in Phoenix), Immunopsychiatry in adults with treatment resistant disorders such as OCD and schizophrenia (Suzanne Bejerot, M.D., Ph.D. , Professor of Psychiatry, Örebro University, Sweden and Janet Cunningham, MD, PhD, Associate Professor of Psychiatry, Uppsala University, Sweden) , and researchers from Gothenberg and FInland detailing POTS and PANS and their experiences researching these areas. Relatively new PANS Clinics in the UK and in Stockholm described their approaches and early data from their patients.
Closer from home, Jennifer Frankovich, M.D. (Clinical Associate Professor, Stanford University School of Medicine) discussed latest findings regarding inflammation in patients from the Stanford PANS Clinic, and Cynthia Kappahn M.D. (Clinical Professor, Stanford) discussed her experience treating youth with eating disorders, particularly those with PANS-related disorders.
Perhaps the most moving part of the conference came when a mother described her and her daughters journey with PANS. her daughter is now pursing a career in music and she performed for he audience two original songs, with accompanied guitar, that brought down the house.
The two-day conference was a huge success - in providing much needed information and support to families as well as information sharing and collaborations among researchers and clinicians. Speakers were warmly welcomed - some pictured here in the Malmo Town Hall meeting with the mayor - the first woman mayor of Malmo!