PANS PANDAS UK chosen as new president 's designated charity
PANS PANDAS UK have been chosen by Greater Birmingham Chambers of Commerce (GBCC) president, Deb Leary, as her designated charity.
PANS PANDAS UK are a relatively young charity, established in 2018 by a small group of parents with children suffering with 'Paediatric Acute-onset Neuropsychiatric Syndrome ' and 'Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections ', abbreviated to PANS and PANDAS.
The charity has grown considerably since then and supports over 4,000 families in the UK affected by these neuro-psychiatric conditions, caused by a misdirected immune response to a common infection such as strep throat, chickenpox or even Covid-19.
Despite containing the word paediatric in its name, PANS can affect adults too.
Rather than just experiencing the normal symptoms of an infection, those who are susceptible can become extremely ill with a range of peculiar and seemingly unrelated symptoms overnight often losing the ability to function normally.
Awareness amongst medical professionals is poor and many children with these conditions are either misdiagnosed with ASD, a psychiatric illness or ADHD. Indeed, in many cases children are described as extremely naughty or accused of attention seeking and parents are often blamed and sent to parenting classes.
In reality, something as simple as routine antibiotic or anti-inflammatory treatments can resolve all symptoms if the condition is caught early enough. While there are no official statistics for the prevalence of these conditions in the UK, US researchers estimate that one in 200 children may be affected.
PANS and PANDAS are not easy conditions to diagnose as they can present so uniquely in different people. The conditions are characterised by the 'sudden onset ' of obsessive-compulsive disorder, tics or eating restrictions.
Christopher Blyth (pictured) was diagnosed in 2019. His symptoms were originally ignored by doctors, thought to be an infection, but he then started to develop behavioural changes and sensory issues.
Within the space of two weeks Christopher had developed a body tic, verbal tics, memory issues, anxiety, OCD, became withdrawn at school and his behaviour was awful. Christopher was changing right before his parent 's eyes and they just didn 't know what to do to save him. They started researching what it could be online and found the PANS PANDAS UK website.
Christopher 's Dad, Matt said: “Our son had all of the symptoms and the website stated this disorder can be brought on by a strep illness. We knew he had been unwell weeks prior to the onset of all these symptoms and that this was what had caused these problems.
“We immediately went back to the GP with some resources from the charity. Luckily, the GP we saw this time knew exactly what we were talking about and had trained in paediatrics. He gave us two weeks of antibiotics and blood forms to get the necessary tests done. We were also referred to an NHS paediatrician. Within 3 days of the ibuprofen and antibiotics Christopher 's speech started returning to normal, his behaviour became more rational, the anxiety was better and his body tic wasn 't as frequent. ”
For more information please visit the charity 's website: www.panspandasuk.org or email [email protected]
Please support PANS PANDAS UK in their current Christmas Challenge fundraising campaign: The Big Give - PANS PANDAS UK.
The donation link is open now and the first £5,500 received will be doubled.