“I remember feeling like no one believed me. I was anxious all the time, confused, angry and disorientated.
No child should ever feel like that.”

We are the only UK charity working to raise awareness of PANS and PANDAS.

With your help, we will continue to drive forward understanding and change. We need you on this journey towards more equitable recognition, treatment and support.

Can you help us to support more young people and their families?

Why should I become a Friend of PANS PANDAS UK?

An individual young person’s voice can be very powerful, but many young voices are even stronger. Our Youth Board recently visited Parliament to share their lived experience with MPs, now we would like to share their powerful stories with you:

“I saw lots of different doctors and specialists. There was a lot of travelling, and lots of questions about things I didn’t really want to talk about with strangers… Nobody told me what was wrong with me”. 

“I remember feeling like no one believed me. I was anxious all the time, confused, angry and disorientated; no child should ever feel like that. It took over four years for us to find someone who could help and all the time I felt ignored. Invisible. Lost.” 

“Every time I got ill, my symptoms got worse. My tics spread to my neck, arms, back and  fingers, and my thoughts became even more frightening. Some days it was really hard to leave my mum and go into school. I wanted to see my friends, but I felt like something terrible might happen…” 

These are all very powerful quotes from children and young people with PANS or PANDAS, but the conditions can have a huge impact on the whole family, too:

“My mum has had to give up her career to become a full-time carer as my brother is no longer able to attend school”. 

“It can sometimes feel very isolating as I can no longer have friends over to our home due to my brother’s [fear of] contamination . It is also difficult for me to spend quality time with my parents, as they are continuously helping my brother to do even the most basic tasks in life”. 

“For a family who used to love socialising, hosting friends and family regularly, our world feels very small; sometimes it feels as if we are in lockdown again”.