Adversity: Daughter diagnosed with PANDAS
Advocacy: Joined other parents in advocating for PANDAS research & education
“I just don’t think it’s possible to walk away [from PANDAS advocacy] when I know another family will wake up to this reality tomorrow.”
When Susan Dailey’s daughter was 3, she was a sunny, happy, flexible little girl. One day, literally overnight, she developed crippling fears that kept her in a shell of terror, unable to attend school or play with friends. She was diagnosed with Obsesssive Compulsive Disorder, one of the top 10 most debilitating illnesses in the world. After a seemingly unrelated diagnosis of ear infections, she received antibiotics, and was fine within a few weeks. After 3 years of a joyous childhood, her daughter’s brain appeared to be under attack again. Her parents spent the next 18 months searching for answers as to how a mental illness could come and go with such a vengeance. They traveled to Psychiatrists, Neurologists, Developmental Pediatricians, Immunologists, and Therapists. No one knew how to help this child. They were told repeatedly to simply accept the diagnosis; that sometimes these things just happen. Susan could not forget the sudden and overwhelming onset of the illness. How could the confident, goofy child she knew have vanished so quickly? That clue finally led her into discussions at an IOCDF conference with researchers into an illness called PANDAS – Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. Susan’s daughter was diagnosed shortly after that, and with proper treatment, was back to her life within a few weeks.
Susan felt that her family had been extremely fortunate to find a diagnosis, and decided to become a voice for the thousands of children and parents who were not finding answers. Through an informal alliance with parents and researchers, she was able to contribute to research symposiums, educational conferences and on-line information. Today, Susan is on the Board of Directors at the International OCD Foundation, and brings to that role a passion for fundraising for research into Pediatric OCD, especially sudden onset due to infection. She is also passionate about educating Pediatric Therapists about the correct treatment using ERP (Exposure and Ritual Prevention) for all children with OCD. Susan finds great joy in speaking with parents of children with OCD, and in spreading realistic hope that every child can have a childhood filled with joy instead of debilitating fear. She hopes to spend time in the coming year, learning more about the relationship of infection to sudden onset anorexia’s in young teens and children.