PANS PANDAS is a term that refers to two conditions triggered by the body’s immune system attacking the brain after fighting a pathogen. The conditions have many symptoms such as behavioural regression, OCD, anxiety, insomnia and tics. Those who have PANS PANDAS are often misdiagnosed due to the conditions being relatively unknown in the UK. I interviewed Katy Hindson, Health Development and Communications Lead at PANS PANDAS UK, to learn more about this condition.


Due to PANS PANDAS being a more obscure condition many people will be either undiagnosed or misdiagnosed and this can have serious consequences. “We know that there are far more people in the UK that are likely to have PANS and PANDAS than ever get a diagnosis, and that's because levels of awareness are still really low”. Due to the lack of diagnosis there are a lot of impacts that are felt by those who have one of the conditions and are not even aware of it. “They might feel like it’s their fault or that there’s something that they could do differently. They might get incorrect diagnoses.” Being misdiagnosed is one of the biggest problems that people with PANS PANDAS have due to its many symptoms. “People might end up with a whole collection of different diagnoses which describe the symptoms that they experience but individually.”.


Recognition is a big mission for PANS PANDAS UK as that will help to reduce the misdiagnoses that happen. And legal recognition is a big step towards this. “PANDAS is recognised by the World Health Organisation, and both PANS and PANDAS are recognised by the NHS now”. This should mean that receiving treatment and getting a correct diagnosis should be made easier for individuals with PANS or PANDAS. However, Katy stresses that “what this doesn’t yet mean is that every hospital is treating the conditions.” She goes on to say that PANS PANDAS UK “are working really hard to make some change there to make sure it doesn’t matter where you live or who you are or how old you are, if you go and see a doctor they will consider whether or not you might have PANS and PANDAS”.


The team at the charity see it is very important to spread the word about PANS PANDAS, but there are challenges that come with that. “It’s hard for us to reach outside of our community and make people understand why they need to know about the condition.” This could be due to many reasons such as other conditions having more publicity and that “stigma around mental health symptoms persists”. These factors can make it difficult to “shout very loudly about PANS and PANDAS”.


If you want to get involved and do your bit for PANS PANDAS there are many ways for you to do so: “fundraising, being open talking about the condition, getting in touch with your local MP and encouraging them to join the All-Party Parliamentary Group, encouraging your schools to take our CPD accredited teacher training”. Anything, even something as small as one conversation can have a bigger and wider effect. Additionally, every Thursday from eight to nine there is a community lead event called “PANS PANDAS Twitter Hour”. This is a time for the community to come together and “share information about what the conditions are, things that are happening in the community, support groups. Just a lot of information and lots of small snippets of people’s stories to try and get people to engage.”


If you want to learn more about PANS PANDAS, visit PANS PANDAS UK here: