When you ask Executive Director Kerry Henrikson why she believed it was so important to create Pandas/Pans Ontario in 2014, her answer is easy. “I didn’t want other families to feel isolated and struggle like I did.” In 2013, her son and two daughters were all diagnosed with Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, or Pandas. The most common symptoms include the onset of Obsessive-Compulsive Disorder, tics, anxiety, restrictive eating, and hyperactivity. Children with Pans (Paediatric Acute-Onset Neuropsychiatric Syndrome) experience similar symptoms, but have been triggered by viruses or bacteria other than Strep. Henrikson explains that both of these Autoimmune processes cause antibodies to attack the child’s brain, causing inflammation. Treatments include antibiotics and anti-inflammatory medications, and the success rates are high when children are diagnosed early.
Pandas/Pans Ontario works to provide support, awareness and resources to communities across Ontario, including individual support sessions, community and online support groups, educational presentations, fundraising events, and coordination of medical and educational resources. “Once my children were diagnosed and receiving treatment, I came across another family who was struggling through the process and I wanted to provide them with some support. These discussions grew and we became a sort of peer support group,” Henrikson explains. “My initial goal for starting the organization was not just to connect the families across the province, but to find more help for them. I felt that responsibility. Our doctor wasn’t accepting more patients at that time and it was very difficult to find any other doctors who understood this condition.”
One of the greatest challenges for parents remains finding a doctor with knowledge about this condition. “We have one paediatrician in the province specialising in the disorder, but she has so many cases and a long waitlist,” she explains. In order to overcome this problem, Henrikson spends a great deal of time attending conferences and spreading the word about Pandas/Pans. “In addition to supporting the families, I try and do as many medical conferences a year that we can afford to do. Much of the knowledge we have gained has come from the United States. Their research is more advanced than ours. They have a clinic in Stanford, Arizona and they are looking to open several more.” In Canada, there is a Pandas/Pans clinic in Saskatchewan. It runs once a month and a specially trained nurse triages patients and assesses them for Pandas.
Throughout the province, Pandas/Pans Ontario has had much success with their website, www.pandaspansontario.org. “I think it’s great that we’re able to reach more families through different kinds of media and we are going to continue to connect with people in this way. We’ve been contacted by families from around the world.” Henrikson’s goal remains to continue spreading the word about Pandas/Pans. In order to do so, she is hoping to expand her group’s fundraising efforts. “In the United States, their fundraising efforts are supporting their non-profit organization. We are looking towards fundraising as a means of expanding our services as well.”