The month of May is Mental Health Awareness month. It is estimated 1 in 4 people will be touched by mental health issues themselves or in their families. Every word we utter to a friend or a neighbor to erase stigma is important! (See end of this newsletter for a list of several resources.)
Your PANDAS-PANS advocacy grassroot efforts have pushed against the stigma surrounding our child’s illness. Following are two important updates in response to your efforts. The tide of research is beginning to turn. Below we highlight a very important Neuroimmunology review article by the Columbia University Neuroscience team, Drs. Agalliu, Cutforth, Platt.(Link here) Here they challenge neuroscientists to look more deeply into our children’s illness. It is exciting! They explain areas where discoveries are needed to make clear the pathophysiology of many forms of AE, PANDAS-PANS and Sydenham Chorea.
Second, this month the PANDAS/PANS consortium of physicians is publishing its first set of Treatment Papers in the JCAP. It is a vital step in elevating the conversation surrounding this illness and gaining medical access for our kids (We will alert when it is released).
Our children are part of a larger pediatric mental health problem and we know as advocates we simply cannot give up speaking out. The CDC states:
“These disorders are an important public health issue in the United States because of their prevalence, early onset, and impact on the child, family, and community, with an estimated total annual cost of $247 billion. A total of 13%–20% of children living in the United States experience a mental disorder in a given year, and surveillance during 1994–2011 has shown the prevalence of these conditions to be increasing. …Surveillance efforts are critical for documenting the impact of mental disorders and for informing policy, prevention, and resource allocation.” (Link here)(MMWR May 17, 2013)
They carefully explain how, thru various diseases using animal model research, the blood brain barrier is breached by the auto-immune system and mental health issues occur. They also explain how and why treatment works! It is a broad scoped review and much needed. Read and Absorb This Paper! Treatment moves forward when mechanisms of illness are proven.
Did you know? that autoimmune encephalitides and strep related illnesses like Sydenham Chorea, and PANDAS-PANS (named here as “Basal Ganglia Encephalitis” BGE) have had little financial investment into explaining HOW these illnesses occur? The team explains the latest in research and where we can be optimistic. The PANDAS disease BGE model is partly explained by Agalliu’s research.They explain,“This model of post-Strep pyogenesautoimmunity demonstrates a central role for the cellular adaptive immune response (e.g., bacterial-specific Th17 cells in the CNS) in disrupting BBB function” (page 3).It also explains that despite immunotheraphy repeatedly pointing to healing, treatment is difficult for us to get because often doctors don’t understand the basic science of how mental illness and autoimmunity merge.
PRINT THIS. SHOW YOUR DOCTOR. SHOW YOUR DONORS.
Sydenham Chorea is an “old and neglected” disease with little research funding around it. Drs. Agalliu and Cunningham have done cutting edge work that will translate directly to the cutting edge "family" of AE and PANDAS-PANS. Together these disease models are a promise to heal millions of heretofore neglected children.