PANS PANDAS is a little-known autoimmune disease that has recently seen a rise in attention. PANS PANDAS refers to two conditions which are grouped together due to their extremely similar causes and symptoms. PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal) occurs after a strep infection when the body’s immune system does not stop and instead starts to attack the brain. PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) is still caused by an overactive immune system, but the cause is not limited to one illness.  

Living with PANS PANDAS can alter day to day life and make everyday activities more challenging. I talked to Anna, an 11-year-old who has recently started secondary school, to find out what living with PANS PANDAS is like. 

When Anna’s PANS PANDAS triggered, she was on holiday in America with her family. One day she had two seizures and that was the trigger. Seizures are a common trigger for PANS PANDAS and almost at once behavioural differences could be seen. This is due to PANS PANDAS being an acute onset disease. After she had her second seizure, she was prescribed anti-seizure medication which were originally thought to be the cause of her sudden behavioural changes. “But then we figured out it was more than the tablets” Anna explained, “I came off the tablets and we realised I started having a lot of anxiety.” 

As she time went on, Anna began to show an increasing number of symptoms of PANS PANDAS. “I worry about getting ill, so anxiety and germaphobia, I worry that something bad is going to happen, but mainly I worry about germs” she continued to tell us about her symptoms commonly associated with OCD “I think I have to do things an even number of times to make sure I don’t get anything wrong with me” 

All these symptoms make an impact on almost every aspect of Anna's day to day life “I wake up and my belly hurts and I struggle with school” 

One symptom that many people living with PANS PANDAS experience is separation anxiety Anna told me about this and how she finds it difficult to be away from her mum. This further impacts on her day-to-day life often stopping her from being able to do things she otherwise could.  

One big life change that comes with PANS PANDAS is the medication. Anna must take up to 9 tablets a day in order the try and combat the challenges that she is faced with. “I take three ibuprofens, one with each meal. I take a belladonna; I take antibiotics three times a week. I also have to, because of my antibiotics, take probiotics so I'm not killing all of the good bacteria” She also takes antihistamines. 

PANS PANDAS also carries an air of uncertainty as Anna has medication for six months now but doesn’t know what will happen once that period has ended. “We don’t know what will happen at the end of the six months it might be that I’m all good but if it's still not good, then I'll probably still have to take some (medication).” 

Anna was incredibly lucky to get diagnosed with PANS PANDAS when she did as if it goes unrecognised for too long it can become chronic or even lead to years worth of mental recession. If you want to help people like Anna who have PANS PANDAS, you can donate to PANS PANDAS UK.