October 9th is PANDAS Awareness Day, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus occurs when streptococcus (what we know as strep throat) triggers a misdirected immune response and results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities and restrictive eating. This can also occur with other viruses, pathogens and bacteria. Now, the general term for both conditions is PANS Pediatric Acute Neuropsychiatric Syndrome. It is estimated that 1 in 200 children will be or are currently affected by this disorder. Yet, few parents or physicians have heard of it or know how to treat it. Unfortunately, because of the wide variety of symptoms many psychological in nature, the children will often be misdiagnosed; often numerous times, with a psychiatric condition. But, it is in fact their immune system is having a misdirected response and causing inflammation in the brain rather than solely a psychological diagnosis. If you look at the map above, there are many states that have not only made an official PANDAS Awareness Day but are also introducing a code into legislature so that insurance will cover treatments. Treatment for PANDAS, as it stands right now, can be very costly as every child exhibits symptoms differently and can require multiple visits many different doctors. This is all before actually obtaining the correct diagnosis, if in fact they ever do. Though change is occurring, it is taking time for the medical community to embrace, treat or even acknowledge this terrible illness. Ultimately, this is a grassroots effort driven by families such as mine who have been told again and again that their child did not have an illness but a psychiatric condition.
Advocation
Though this process takes time, it is important to realize that there are also many groups and resources that anyone can turn to. These groups are out there advocating for this illness and its awareness such as PANDAS Network, The Foundation for Children with Neuroimmune Disorders, PRAI Pediatric Research Advocacy Initiative, ASPIRE The Alliance to Solve PANS and other Encephalopathies. These groups and organizations are making great strides and new research is coming out every day proving the fundamental relationship between brain inflammation and the trigger of viruses, strep etc. Just this week there were two notable conferences: the first in Sweden with the absolute top doctors and scientists coming together to collaborate on PANDAS/PANS and encephalopathies and the other in Washington DC again the absolute best professionals in the PANS and PANDAS universe.
If you are already aware of PANDAS/PANS first hand; as they say, it takes a village and to raise awareness for PANDAS/PANS it is going to take more than that. It is going to take all of us parents who have been through this illness with their children to speak up. Some have not been as lucky as my family and are still battling everyday with the OCD, tics, anxiety, rage, depression, suicidal ideation. Right now, it can be difficult to create a dialogue about PANS/PANDAS considering the overwhelming stigma that still surrounds mental health and corresponding symptoms. But, the most important thing is to tell our stories even when they don’t want to be heard in order for others to understand, empathize and as a result create the change that is needed.
Share Your Story
This is precisely why I’m sharing our story and this is the first official day of my website PANDAS Healing Journey. My daughter and I do not want another family to go through what we did to find answers and heal. This is an illness so isolating that I will admit that I was afraid to speak up; afraid what other people might think of me, my daughter, my family if they heard the horrible symptoms that we endured. Another reason is that it can be traumatic to talk about because we have so many wounds that have yet to be healed. But what is more important is that we speak our truth and tell our story and be authentic. This overcomes the stifling fear that we and so many others have experienced. This is what I try to instill in my kids all the time:that sometimes you have to be vulnerable and be true to your story. Though this is a persistent truth, even I falter, but we keep on going. Recently a friend shared a very similar story to what my daughter encountered and at that moment I realized how crucial it was to share our story. So for PANDAS Awareness Day, I say share your story with someone today because you might just make a small difference in this big fight that we’re fighting to be heard. Speak strongly, speak sympathetically, but also recognize when to listen to really hear the stories of others. PANDAS is an incredibly isolating and devastating illness and takes its toll on the children, family, marriages even friendships. We had sunk into the quicksand and somehow were able to pull ourselves out. We felt alone, that no one would understand. We all have different stories, different symptoms, different ways of healing. If you’re beginning, in the middle or end of this journey you too may feel alone but we are not; by sharing our stories we all become connected.