By Abbie Cornett
As a patient advocate, I have worked with patients and patient support groups, attended meetings, worked on legislation, studied policy and written articles. But, this year, I was given the opportunity to do something that directly affects the lives of patients and their caregivers in a new and direct way.
Dr. Roger Kobayashi, clinical professor of pediatrics at the UCLA School of Medicine in Los Angeles, Calif., and a practicing immunologist in the state of Nebraska, as well as an old friend and ally of mine, asked me to help start a patient support group for families of children who have been diagnosed with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), which is a subset of pediatric acute-onset neuropsychiatric syndrome (PANS).
PANS/PANDAS has only been recognized in the past few years as a disease and has been the subject of much debate. This lack of information, coupled with the profound symptoms exhibited by the affected children, can be devastating for the families. As a physician who has been very active for years on issues that affect patient access to care and policy issues, Dr. Kobayashi wanted to find a way to offer support and education for the families of these patients.
We at IG Living thought his idea was a wonderful way to support children and their families and agreed to help form the Midwest PANS/PANDAS support group through I Give for Kids, our charitable division. With tremendous support from Dr. Kobayashi, his staff and the physicians at Boys Town Hospital, the first meeting was held October 18.
Even though I have attended many events like this in the past, I never really understood all of the hard work and planning that goes into organizing a patient support group. I can honestly say that every minute I spent working on it was worth the effort. With more than 80 people attending from four states, the meeting was one of the most rewarding experiences of my life. I was able to talk to the parents one-on-one and got to really understand their needs and concerns. I came away from the meeting with a lot of new ideas and a renewed sense of purpose. I can only hope that this is also a new beginning for me; I would love to become directly involved in starting new patient organizations to support those living with chronic illness.
Have you been involved in the start of a new patient support group? If so, I’d love to hear about your experiences.