A Powerful Voice for Young People: Raising Awareness of PANS and PANDAS
Wednesday 08 October 2025
Our 1ACE South education team are working with a young person called Ella who faces both physical and mental health barriers every day due to her diagnosis of PANS PANDAS.
Ella has grown and developed a clear role in the PANS PANDAS community as an advocate for young people suffering from the condition, which is often undiagnosed, and is keen to raise awareness.
Ella has taken steps to raise awareness, including writing to her local MP explaining the barriers she faces due to a lack of awareness and creating leaflets to hand out in her local library.
PANS PANDAS Awareness (the disorder, not the bear)
How many of you knew it was PANS PANDAS Awareness Day on October 9th? In fact, how many of you have even heard of PANDAS or PANS?
My name is Ella, and for most of my childhood, I was with CAHMS (Child and Adolescent Mental Health Services), dealing with what everyone thought was mental health/behavioural struggles, but it turns out my brain was inflamed.
Brain inflammation can mimic anything, from mental illness to autism/ADHD to chronic illness; it is known as the brain on fire condition.
PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection) and PANS (Paediatric Acute Neuropsychiatric Syndrome) are autoimmune conditions where your immune system mistakenly attacks your brain causing inflammation.
PANDAS is triggered by a strep infection whereas PANS can have any trigger including mould toxicity.
I was believed to develop PANS PANDAS when I was a young child, beginning with separation anxiety, OCD, and a change in my mood and behaviour that was put down to my grandad’s death and anxiety. However, things continued to deteriorate, refusing school every day for years, being in freeze/flight in school and fighting at home. When I was 14, I was diagnosed with autism and ADHD, which made sense of the way my brain worked, but this meant my PANS PANDAS was missed.
When I was 14, my brain inflammation got worse; we knew something more was going on. I suddenly developed a tic out of nowhere. They started with a few noises but quickly exploded into complex, severe tics. It felt like I was out of control – well, I was. My tics would shout, swear, run, jump, talk, and I felt like nobody recognised me. I didn’t even recognise me.
My tics became too severe and disruptive for school, and I was too unwell to learn. Even before my tics, school was very hard, and I was barely holding on through the school day. I struggled to concentrate on my work, sit down all day, be in a class. It was painful trying to make it through each lesson and each day. Every day I survived made my mental health worse. This is where Five Rivers 1ACE came in. Not only do I not have to survive, but I thrive in education, at my own pace, in my own way.
My outreach teacher, Katy, has helped me find my love for learning again. She fully understands me and has spent a long time getting to know me and building my trust. When I first met Katy, I was shut down to education, and I couldn’t even say the words “Maths” or “English”. Katy truly understands how my past experiences have made me feel and has worked with me at my pace with no pressure, and now we have a lovely bond, and I really enjoy our sessions together.
Katy has said that I have also taught her so much about PANS PANDAS and my experience in education. We thought that, because PANS PANDAS Awareness Day is coming up, it would be the perfect time to raise awareness.
My condition has deteriorated in the last few years: living with a feeding tube, being a wheelchair user and developing seizures, and if I can use what I’m going through for anything, I’d like to share my story and raise awareness on this condition which often goes unrecognised, has little research and often we are not treated like we should be by the NHS.
Thank you so much for taking the time to read about PANS PANDAS.
Ella, aged 19.
If you would like to find out more visit: PANS PANDAS UK