Time...where has the year gone?
"Time is too slow for those who wait, too swift for those who fear" -- Henry VanDyke
"They always say time changes things, but you actually have to change them yourself." -- Andy Warhol
"The past cannot be regained, although we can learn from it; the future is not yet ours even though we must plan for it" -- Charles Hummell, Writer
Just a little over a year ago, 12 year old Lauren Johnson ran up and down the streets of her neighborhood "trick-or-treating" with her friends - laughing and smiling!
Lauren's life would be forever altered when she awoke the next morning. There were unknown changes occurring in her body and brain as she sat on the floor of her living room, happily trading her candy with her friends. As Lauren slept that night, her condition would evolve into a poorly understood autoimmune disorder called "PANDAS"! (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), which is a subset of a broader disorder known as PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders).
Over the next few weeks, dozens of doctors would be unsuccessful in trying to help Lauren. We refused to give up or give in that Lauren (our bright, caring, beautiful daughter) became mentally ill, overnight. We persevered, scoured the internet, sent emails to anybody, everybody pleading for help. Our hard work paid off. We were soon contacted by the local media and then the National media. Her story would quickly gain worldwide media attention. Soon after, she would be correctly diagnosed with an autoimmune disorder and get the help she desperately needed. Lauren would be "one of the lucky ones". Over a year later EVERYBODY knows of the infamous “sneezing girl”, her story went viral, around the world. She is still recognized by someone almost everyday.
We quickly learned that Lauren was not alone. She does not suffer from a "rare disorder" but rather from a disorder that is rarely known or diagnosed. Thousands of children with PANDAS suffer for years. Leading researchers estimate that hundreds of thousands of children with PANDAS suffer for years before only a fraction of them are correctly diagnosed and treated. The impact on nuclear and extended families is astounding. Many children are unable to attend school or socialize with family and peers. Most family's lives are literally turned upside down overnight and become emotionally fragmented as their children suddenly display bizarre behaviors. They struggle for an accurate diagnosis and treatment because few doctors fully understand how to diagnose or treat this devastating disorder.
Nearly one year ago, we came together to launch the PANDAS Resource Network. Since then, our community has grown to over 1500 family members strong, who come from every corner of the country and many parts of the world.
We have met our goals thus far to create an organization where families, physicians, educators and other mental healthcare providers could interact and become educated on this complex disorder. We are proud to offer information on our website in a format that is easy to read and navigate, helps educate and provide technical information for healthcare providers. We have succeeded in small steps toward our mission, goals which we could not have achieved without the help of a small handful of parents and physician's dedicated to our organization and the community it serves.
We are amazed and humbled by the efforts that have already been undertaken by individuals and small groups of people with big ambitions to raise funds, propel research forward in order to help unlock the remaining "mysteries" within this disorder.
Over the past year, we have learned that the infection that leads to PANDAS exacerbations is Group A beta-hemolytic streptococci (GABHS). Physicians and researchers have documented manifestation of PANDAS symptoms that coincide with a known strep infection. Re-infection with this organism can cause a subsequent PANDAS exacerbation. Additionally, we learned that among our members, almost 50% of families have more than one child affected by this disorder. However, symptom exacerbations and a perpetuation of the autoimmune response can have more than one infectious agent, such as GABHS, Mycoplasma Pneumoniae and Tick borne (Lyme) illnesses (what we label PITANDS). Most of these cases have been misdiagnosed or undiagnosed for months and/or years. This also underscores the need for a new name for this disorder and we hope to see one in the near future!
Most importantly, we know that we are still learning and until we fully understand what causes PANDAS/PITAND we will never fully understand how to eradicate it. The understanding of this post-infectious autoimmune disorder is still evolving and physicians and researchers still have a journey in fully understanding the immunopathophysiology.
However, by uniting as a community we have the ability to share information and help researchers collect data to drive this important research forward. Our PANDAS families are the pioneers in understanding this disorder and our goal is that our children's children will not have to face the same challenges and obstacles to receive accurate diagnosis and obtain effective treatment.
Funny, how one little girl who couldn’t stop sneezing can forever change the world and help so many families so desperately in need. We are so proud of Lauren. She missed 8 months of 6th grade last year do to her illness but vigilantly worked to maintain her honor roll status and also taught herself the clarinet so when she returned to school she could return to band and be with her friends. Never missing a beat.
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