D-CYPHR (the DNA, Children + Young People’s Health Resource) want to get more families involved in health research that could help improve our understanding and develop new treatments for many conditions, including immune diseases and mental health conditions.
We have collaborated with PANS PANDAS UK to help spread the word about the charity and to improve awareness of the neuropsychiatric conditions PANS and PANDAS.
Since D-CYPHR launched last year, many families have been in touch to share their experiences of living with PANS and PANDAS and to ask questions about research opportunities. These conditions are currently under-researched and awareness from medical professionals is low.
Felix’s story
Felix became ill overnight in January 2023. He woke up one morning and refused to eat. He could not get dressed, his clothes felt like they were burning. He started clearing his throat over and over. His personality changed, becoming uncharacteristically aggressive and violent. His family became trapped in their own house, unable to welcome visitors- this lasted months.
Online, his family came across the PANS PANDAS UK support group. Their GP agreed to trial antibiotics and blood tests which showed he had a ongoing bacterial infection. Now a specialist is helping them establish a longer-term health plan.
His parents commented:
“The condition has had a huge impact on our family; it affected us at work and socially. We were lucky to have very supportive friends and family, but it took its toll on everyone involved. To see a child in so much distress and not be able to help was incredibly upsetting. Children should not have to suffer, and we should not have to battle for treatment or be told that ‘we don’t believe in this condition.
"Children’s health research is vital if we want to understand and be able to treat these conditions.”
What is PANS and PANDAS UK?
PANS and PANDAS are a UK charity that provide information and community support to children and families. They raise awareness of the symptoms and treatment options for healthcare professionals so that they are better equipped to recognise when a child may have PANS or PANDAS.
PANS and PANDAS are conditions that often appear very suddenly and affect the physical and mental health of children and young adults. They develop in the wake of common infections (such as COVID-19, chicken pox, influenza, or strep A in PANDAS cases), when the infection subsequently causes a misdirected immune response and/or brain inflammation.
Children with PANS or PANDAS experience a variety of symptoms ranging from mental health symptoms to changes in behaviour and difficulties with movement.
Families and children are provided training in educational settings so that those living with these conditions receive the support they need.
Pearl’s story
“Hi, my name is Pearl, I am currently 11 years old, and I suffered with PANDAS for 18 months. I missed 9 months of school due to my illness.”
Pearl has seen a lot of improvement since her diagnosis and treatment has helped her get back to a normal life.
She said:
“It all started with a strep infection in my throat about a week or two before, it then led on to severe symptoms such as panic attacks, hallucinations, chest pain, OCD, anxiety, separation anxiety and more. After hours of waiting in A&E I would be discharged almost immediately each time and told I just had anxiety.”
After months of symptoms, her GP suggested PANDAS and a blood test showed her levels of strep bacteria were high. Following two antibiotics, Pearl started to feel much better and went back to school.
She described her condition in her own words:
“PANDAS is almost unexplainable. It’s a condition that the NHS don’t really treat and not many people know about. PANDAS is caused by a strep infection and PANS is caused by other infections such as chicken pox. It can also leave you with some problems like it did to me, such as anxiety, sensory issues, overthinking and OCD type symptoms.”
She urges families to support children’s health research for families waiting on answers:
“I think more families should support children’s health research, not only to help treat conditions like PANDAS but to help all children with health issues. To anyone who feels nervous about health research I can promise you that it will benefit children’s future. Children can be recognised and treated much faster, even if it’s an untreated condition right now such as PANS and PANDAS.”
How can PANS and PANDAS UK and D-CYPHR work together?
Two focus areas of D-CYPHR are mental health and immune conditions, and these are relevant to PANS and PANDAS.
D-CYPHR is not a PANS or PANDAS research study, but with more people signing up for D-CYPHR and providing samples, we can delve further into finding out about immune conditions and mental health.
We are open to support all kinds of research, PANS and PANDAS researchers are welcome to apply for our help with their studies.
Fulvio D'Acquisto – Researcher
Fulvio D'Acquisto is a Professor of Immunology at the University of Roehampton, London.
His current research focuses on the immune system as gateway for mental and physical wellbeing, having begun working on T Cells and autoimmunity in his postdoctoral research at Yale, then working on Immunopharmacology at Queen Mary University of London, and exploring the connections between the immune system and mood.
He commented:
“We are in an incredibly exciting time for immune research. The field is rapidly advancing, with new technologies allowing us to probe deeper into immune function at molecular and cellular levels. One of the most promising developments on the horizon is the potential for combined therapies that target both the brain and the immune system - addressing both the physical and emotional aspects of disorders. These integrated approaches might provide benefits beyond our current expectations, offering more comprehensive and effective treatments for complex conditions like PANS/PANDAS.”
As a researcher Professor D'Acquisto is an advocate for research that combines mental and physical health, such as the D-CYPHR programme.
He explained:
“Studying mental and physical health together is critical because they are deeply interconnected, as evidenced by conditions like PANS/PANDAS. My research has consistently shown that immune function can influence behavior and mental states. For example, our work on T cells in immunocompromised mice demonstrated their role in regulating genes associated with anxiety. By studying these connections, we can develop more holistic approaches to understanding and treating complex disorders that affect both mind and body.”
How to sign up to D-CYPHR?
D-CYPHR are looking for participation from all children and young people regardless of whether they have medical conditions or not – effective genetics health research depends on inclusion of all.
Any child in the UK aged 0 –15 can join D-CYPHR with parental consent.
By donating a saliva sample and health information, you will be supporting all kinds of research, and we can also contact you if a special study begins which you are eligible to take part in.
Join today: D-CYPHR | DNA, Children + Young People’s Health Resource (nihr.ac.uk)