Regardless of how educated a parent you are, or how conscientiously you previously parented, you will have a limited toolbox when confronted with your child when he or she is overwhelmed by immuno-neuropsychiatric symptoms as occur in PANS/PANDAS/BGE. It often puts parents in a position where they must stop, manage and control extreme behaviors. This is equally confusing and scary for your affected child and for their siblings. Even with a cooperative general practitioner, managing and coordinating care for such a complex disorder will likely challenge and strain your family’s capacities. — Especially if you are a family with more than one child diagnosed with PANS/PANDAS/BGE or if you are managing this as a single-parent. You need and deserve intensive support to first cope – and then succeed – in the face of the adversity presented by these disorders.
According to a longitudinal research study conducted at the Stanford PANS Clinic, the median Caregiver Burden Inventory (CBI) during a 1st PANS flare was 37. This score is higher than the CBI for those caring for someone with Alzheimer’s and is equivalent to the CBI in Rett syndrome.
In addition to managing difficult behaviors, you are left to answer questions that are not easily answered and contend with difficult circumstances such as:
These difficult questions and situations need to be handled by parents or caregivers while being in the midst of a traumatic experience. — One that elicits descriptions peppered with adjectives like shock, grief, anger, denial, fear, confusion, embarrassment, hopelessness and helplessness.
Moreover, parents still face unacceptable challenges within Europe locating informed practitioners and accessing care for their children despite accumulating research and published guidelines.
However, what we know from our community, is there is a driven determination and resiliency. Parents and caregivers know their children and are willing and capable of advocating fiercely for the well-being of their own children as well as for the children of others they see struggling for answers and help. It is this sense of purpose that resulted in outstanding efforts to support families by the national advocacy organizations within Europe that combined to form EXPAND. Please connect with your national advocacy organization (here) to see what information and programs they have to offer directly. If you live in an European country without an informal or formal patient group, please contact us at email@example.com and we will embrace you within EXPAND and support you and other families in your country to develop resources and programs tailored to your needs.
EXPAND is able to support you and your family by elevating PANS/PANDAS/BGE to the European level, to stimulate research with international cooperation and endeavor to improve the standard of care throughout Europe, so the needs of those affected by PANS/PANDAS/BG are uniformly addressed regardless of the country in which one lives. We will achieve this with the help of our Scientific and Medical Advisory Board, which is actively engaged in research and activities that will help to inform and raise awareness about PANS/PANDAS/BGE.
EXPAND will engage in advocacy efforts to increase awareness and knowledge globally and in partnership with other influential advocacy organizations around the world, including the Alex Manfull Memorial Fund, ASPIRE, the Foundation for Children with Neuroimmune Disorders, Mending Minds, the PANDAS Network, PANS Australia and New Zealand Advocacy and Support Inc., and PRAI.
Adults suffering from PANS/PANDAS/BGE have their own concerns seeking care and it is our goal to address their concerns and needs as well. We ask that adults seeking care within Europe reach out to us at firstname.lastname@example.org and/or your national advocacy organization to help us develop resources tailored to address the challenges faced by adults seeking support and better access to care.
In addition to connecting with our national patient advocacy organizations, this link (coming soon) provides a list of Facebook support groups and other resources parents, caregivers and patients find useful.