Real Life Stories
We know that reading people’s stories, in their own words, really helps with awareness, understanding and feeling less isolated.
Here you will find lots of real-life stories about children, young people and adults living with PANS or PANDAS, and stories of the people supporting them.
If you would like to share your story, then please get in touch at info@panspandasuk.org
Mark’s Story
“I have seen my daughter go through some awful suffering.
When people suggest that we, her parents, might be fuelling it…
that’s horrendous.
It has been really hard for our family.”
It has been really hard for our family.”
Lucy’s Story
“I had a brilliant childhood. I was so happy all the time.
Then one night I went to sleep and woke up wanting to die.”
Then one night I went to sleep and woke up wanting to die.”
Olivia’s Story
“We were watching our baby break down in front of our eyes and disappear in every single way. If she’d been diagnosed and treated earlier, her life would never have been this hard.”
Evie’s Story
“I imagine people think that if I was braver, tougher, stronger.. then I wouldn’t have suffered all these years. Like it’s my fault that I am not getting well, that I’ve caused this.”
Oliver’s story
“He went from being a perfect, normal kid… to falling from the highest cliff, and he is still stuck at the bottom.”
Annie’s story
“When I look at our family videos, I remember how my daughter used to be. I’d forgotten how close we were, it is heart breaking to look back.
I don’t expect a miracle, I just want to be able to have a conversation with her again.”
I don’t expect a miracle, I just want to be able to have a conversation with her again.”
Helen and Jessica
“It was like somebody else was living in Jessica’s body. She’d just become something that she wasn’t.
It’s terrifying. You try and keep things as normal as possible for your child, but you have no idea what’s going on or why.”
It’s terrifying. You try and keep things as normal as possible for your child, but you have no idea what’s going on or why.”
Jack’s story
“When our son Jack was born, he was developing normally and was a happy, relaxed baby.
In the summer of 2017 when he was just 18 months old, we noticed a dramatic difference in his behaviour…”
In the summer of 2017 when he was just 18 months old, we noticed a dramatic difference in his behaviour…”
Christopher’s story
“Christopher’s story started in January 2019 after having an undiagnosed strep infection.
After various trips to the doctors over the coming weeks, we kept being told it was a viral infection…”
After various trips to the doctors over the coming weeks, we kept being told it was a viral infection…”
Bella’s story
“I would say our daughter, Bella, has always been a sensitive child. As a little girl, she seemed to have lots of friends at school, although she would often feel ‘left out’. She was funny, bright, friendly, creative and full of energy.
Pearl’s story
“One night Pearl said, ‘Mum I feel scared, and I don’t know why’.
I cuddled her to sleep… she woke up the next morning like a completely different child.”
I cuddled her to sleep… she woke up the next morning like a completely different child.”
Rosie’s story
“I was seventeen years old when I was diagnosed with PANS PANDAS, but I had experienced symptoms from the age of fourteen.”
