By Abbie Cornett
IG Living Magazine is dedicated to supporting patients with rare chronic diseases who are treated with lifesaving immune globulin therapy. As part of that commitment, we created a separate organization called I Give for Kids with a mission to support children and their families impacted by childhood diseases (such as pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS)/pediatric acute-onset neuropsychiatric syndrome (PANS), Kawasaki disease and primary immunodeficiency diseases) through education, communication and advocacy. With a range of programs for the public, patients and healthcare professionals, I Give for Kids is dedicated to educating and helping improve the quality of life for those diagnosed and their families.
As part of that commitment, IG Living and I Give for Kids want to bring much-needed awareness to PANDAS/PANS, which has been recognized only in the past few years as a disease, and has been the subject of much debate. A lack of information, coupled with the profound symptoms exhibited by the affected children, can be devastating for families.
The PANDAS Network defines PANDAS/PANS as the "sudden acute and debilitating onset of intense anxiety and mood liability accompanied by obsessive compulsive-like issues and/or tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms." Children who are affected can "quickly begin to exhibit life-changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more."
As the patient advocate for IG Living, it has been my pleasure to get to know some of the wonderful children and their parents who are affected by this disease. I have seen the struggle that many of these families face due to a lack of understanding.
To increase awareness, I Give for Kids wants to help the PANDAS Network recognize October 9 as national PANDAS/PANS Awareness Day. We encourage everyone to go to its website at PandasNetwork.org/2015-2 to learn more about this devastating disease.
Please share how national awareness days have helped people understand your disease.