10/10/2024
All of this. All of it 🔥🔥🔥🔥🔥🔥🔥🔥🔥
IT'S PANS & PANDAS AWARENESS DAY‼️‼️
I'm on a mission 🚀
So is : The Alliance to Solve PANS and Immune Related Encephalopathies.
Learn more and help a child and a family potentially find their way back home because of YOU taking a moment to read a post 🥹
Thank you ASPIRE for leading the way towards recovery👇
🚨It is Time to Address the Crushing Burden of PANS/PANDAS🚨
October 9th, marks another PANS/PANDAS Awareness Day, a day that serves as both a call to action and a reminder of how far we still need to go in ensuring children and adults suffering from PANS/PANDAS are diagnosed and treated promptly and appropriately.
This year, the theme for PANS/PANDAS Awareness Day is clear: It is Time. It is time to act, learn, and push for the care and recognition these patients deserve.
PANS/PANDAS doesn't just affect children and adults—it devastates entire families. From the moment symptoms appear, families and patients are thrown into an agonizing battle for answers. On average, it takes eight doctors and three years to receive a proper diagnosis. During this time, families witness the heartbreaking deterioration of their child's academic, social, and emotional well-being, alongside often terrifying symptoms like OCD, tics, eating disorders, and anxiety.
The financial and emotional toll is staggering. Many parents are faced with the decision to quit their jobs to care for their children, all while facing exorbitant medical bills—many of which insurance refuses to cover. The lack of understanding from schools and healthcare providers compounds the burden, as students often fail to receive the necessary accommodations to support their learning and mental health.
It is time to put an end to this suffering. Early diagnosis can change the trajectory of a patient's life, reducing the risk of a lifelong impact and even tragedies like su***de. We need to prevent symptoms from lingering through adulthood. Families and patients cannot afford to wait any longer for proper care, and we cannot let them suffer in silence. The time to act is now.
It is Time to Recognize the Signs and Symptoms of PANS/PANDAS:
Sudden or sudden worsening changes in personality, mood, or behavior should always raise red flags. Still, not enough people—parents, teachers, therapists, or even doctors—are aware of the signs of PANS/PANDAS. These patients are often misunderstood and misdiagnosed. It is time to recognize the symptoms for what they are: a cry for help from a patient who needs medical treatment, not just behavioral interventions.
It is Time to Diagnose and Treat PANS/PANDAS Promptly and Appropriately:
It is time for healthcare providers to be equipped with the knowledge they need to diagnose and treat this disorder swiftly, preventing needless suffering. We must ensure that no patient is missed. For many families, diagnosis is the first hurdle—one that often comes too late. The sudden onset or sudden worsening of OCD, anxiety, tics, separation anxiety, or behavioral changes can be frightening and confusing. Yet the key to recovery lies in recognizing these as potential symptoms of PANS/PANDAS.
It is Time to Rule Out Medical Disorders Like PANS/PANDAS Before Diagnosing Psychiatric Conditions
Patients with PANS/PANDAS often receive psychiatric diagnoses before anyone considers the possibility that their symptoms stem from an infection or immune dysfunction. By the time patients and families reach a diagnosis, valuable time has been lost. It is time for healthcare providers to rule out underlying medical causes like PANS/PANDAS before jumping to psychiatric labels, giving patients a chance at proper treatment and recovery.
It is Time to Learn How to Support Students with PANS/PANDAS:
School refusal, separation anxiety, emotional changes, and cognitive issues are common in children with PANS/PANDAS, and too often, schools are unprepared to handle them. Teachers and administrators need to understand how this disorder impacts learning and the ability to attend school to support affected students better. Without this awareness, children are at risk of falling behind academically and emotionally. It is time for every school to be part of the solution, not part of the problem.
It is Time to Ensure Access to Affordable, Appropriate Treatment for PANS/PANDAS:
Individuals suffering from PANS/PANDAS—whether children or adults—shouldn't have to face barriers to the care they desperately need. Too many are left in financial distress, forced to fight exhausting battles with insurance companies for essential treatments. It is time for legislators to step up and support mandated insurance coverage for PANS/PANDAS treatments, ensuring that every patient has access to affordable care without facing the crushing financial burden that leaves many feeling helpless. Treatments like antibiotics, immunotherapy, and behavioral therapies must be covered so no one has to battle for access to life-changing interventions.
It is Time to Stop the Suffering of Children and Adults with PANS/PANDAS:
Every day that passes without appropriate treatment is a day of unnecessary suffering for someone living with PANS PANDAS. We must stand together to ensure that no one is left behind. It is time to bring more attention to PANS/PANDAS and stop the needless suffering.
How You Can Help:
On this PANS/PANDAS Awareness Day, let's use our collective voice to advocate for change. Share information, spread awareness, and reach out to those who may still be struggling to find answers. It is time to take action—for the children, for the families, for the future.
Thank you for standing with us and for all you do to support those affected by PANS/PANDAS. Please consider donating today to support ASPIRE's projects and mission of providing support and education.
In hope and health,
Gabriella True, Board President
Come join ASPIRE on October 9, 2020, to Raise Awareness about PANS PANDAS. Share educational materials to increase awareness and education.
