October 11, 2013
JOHNSON, STATE OFFICIALS URGE PUBLIC AWARENESS OF
NEURO-PSYCHIATRIC SYNDROME AFFECTING CHILDREN
Governor Malloy Declares PANDAS/PANS Awareness Day in CT
State Representative Susan Johnson and Senators Terry Gerratana, Joe Crisco, Kevin Witkos and other officials applauded state efforts to build awareness of PANDAS/PANS, a devastating and often untreated condition that severely impact young children with neuro-psychiatric symptoms.
Recently, Governor Dannel Malloy declared October 9, 2013 as the first PANDAS/PANS Awareness Day in Connecticut. In his proclamation, the Governor acknowledged the illnesses are frequently misdiagnosed, undiagnosed, or under-treated due to the lack of awareness, both in the public and the medical community. The legislators are urging the medical community and the public to help children be correctly diagnosed and be treated to end unnecessary suffering. Connecticut now joins multiple states that have officially proclaimed October 9th a day of awareness.
"Because of PANDAS/PANS is often misdiagnosed or missed altogether by the medical community, diagnosis in a child comes as a devastating shock for families,” said Governor Malloy. “We are joining in this national campaign to raise awareness and educate the general public, support research that improves the quality of life for children with PANDAS/PANS and their families and, hopefully, one day find a cure.”
The Connecticut legislature in June passed a bill creating a PANDAS Advisory Council to the state Department of Public Health to provide information about research, diagnosis, treatment and an outreach and education program for health care providers for the recognition of and treatment options for PANDAS.
“This proclamation raises awareness to medical service providers, whether they are doctors, school nurses, social workers or psychologists who work with children. Awareness is the first step to treatment,” said Rep. Susan Johnson (D-Windham), House Chair, Public Health Committee. “I want to thank everyone who worked on this legislation so we can move forward and no longer misdiagnose children. We are working to save children with treatable neurological disorders from a life of severe neurological disorders.”
“This is a serious disease that can afflict young children so suddenly and parents are usually unaware of the syndrome,” said Sen. Terry Gerratana (D-New Britain) Senate Chair, Public Health Committee. “Governor Malloy is doing a great service to our state by making people aware and educating parents to this danger.”
“An abundance of clinical evidence has combined with heart-wrenching personal accounts from so many family members of PANDAS patients, describing the effects of this devastating disorder, to warrant an accelerated policy response from the General Assembly,” Sen. Joseph J. Crisco, Jr. (D-Woodbridge) said. “Last year we enacted law compelling a formal study of this autoimmune malfunction; this year we created a PANDAS advisory council, and early next year the Public Health Committee will receive its first annual report to enhance our state’s effort to help the afflicted.”
“I'm proud that Connecticut has taken the lead on recognizing the difficulties that PANDAS brings to its patients and families by proclaiming October 9th as PANDAS awareness day,” said Sen. Kevin Witkos (R-Canton). “Only through awareness, education and ultimately treatment can we prevent the misdiagnosis and eventual return to normalcy for those afflicted with this disorder. Early detection of PANDAS is essential if patients are to be cured. If we have the opportunity to improve the lives of so many children why wouldn't we take the lead?”
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndromes) are devastating syndromes that are likely as prevalent as Pediatric Cancer and Pediatric Diabetes, yet awareness and education is scarce. Strep, walking pneumonia, viruses, Lyme, and other infections can trigger an autoimmune reaction resulting 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 more. These infections are often asymptomatic and go undetected. The autoimmune reaction can be stopped and symptoms are able to completely remit, but diagnosis and treatment are necessary for this to happen.
“It often takes many years for people with rare diseases to get an accurate diagnosis,” said Mary Dunkle, vice president of communications for the National Organization for Rare Disorders (NORD), which is headquartered in Danbury. “Special awareness days such as this one for PANDAS and PANS can help patients get earlier diagnosis and treatment. NORD supports the efforts of patients and patient organizations to promote awareness of little-known diseases.”
According to the CDC, It is estimated that 13-20 percent of children living in the United States experience a mental disorder in a given year (www.cdc.gov/features/childrensmentalhealth). To further investigate this important mental health issue, President Obama this year launched the BRAIN Initiative with the National Institute of Health (www.nih.gov/science/brain/).