"Until now, there has been little available to explain PID in a way that children understand easily. Now, doctors and nurses have an excellent resource they can recommend to children to help manage their condition and address children’s questions and frustrations in a child-friendly and engaging way." ~ PID UK
Primary Immunodeficiency (PID) refers to a group of disorders characterised by limited or absent function of the immune system. The majority of PIDs are inherited defects meaning that a component is either missing or does not function normally, resulting in increased susceptibility to infection. About 1 in 500 people are born with PID and doctors’ estimate that approximately 5,000 people may be affected by PID in the UK.
Explaining the effects and lifestyle impact of PID to a child can be very challenging for families, especially during times of anxiety and stress around diagnosis. Medikidz, the medical education company specifically for children, has worked in partnership with Bio Products Laboratory (BPL), to publish Medikidz Explain Primary Immunodeficiency, the first resource of its kind, to help children understand their condition and the importance of minimising exposure to infection.
Medikidz Explain Primary Immunodeficiency is written by paediatric communication specialist doctors and peer-reviewed by leading experts in the field. Sponsored by BPL and endorsed by PID UK, British Society for Immunology, UK Primary Immunodeficiency Network, and The Immunology & Allergy Nursing Group, Medikidz Explain Primary Immunodeficiency is a unique, child-friendly exploration of PID, based on the real life experiences, concerns and questions of 11 year old Tom Croall.
"PID is a very complicated condition, and explaining what PID is, and the lifestyle changes that this could mean to a young person, can be incredibly challenging. Medikidz Explain Primary Immunodeficiency has been written with input from doctors and nurses and Primary Immunodeficiency UK are delighted to have been involved in developing this resource as a valuable tool for doctors and nurses to help young PID patients understand their condition and what it means, in a colourful, exciting format" explains Dr Susan Walsh, Director of PID UK.
EMOTIONAL IMPACT OF PID ON THE FAMILY
Having a child with PID forces the whole family to face emotional challenges as they adapt the family lifestyle to help their children stay healthy and avoid getting infections, where possible. Research into the adjustment difficulties commonly observed in children with chronic conditions such as PID indicates that children may feel frustrated, angry, depressed and isolated from their peers if they are unable to join in all activities with their friends due to illness or restriction. Studies suggest that the child’s ability to cope with chronic illness is also dependent on how the entire family is supported to help them comply with treatments and care plans, and to actively seek support.
Emily Carne, Advanced Nurse Practitioner (Immunology and Allergy) and Board Member of the Immunology and Allergy Nurse Group explains:
PID can have a huge impact on the whole family, and explaining its physical and emotional effects can be challenging. For many children, it takes time to come to terms with how PID can affect their lives. One of the most important things we can do for people with PID is to provide accurate, age-appropriate information and to encourage children to ask questions. Previously this has been difficult to do, due to limited resources available tailored for young people. Medikidz Explain Primary Immunodeficiency gives us something completely new that will help children and their families across the UK better understand PID.
Children who lack information about their diagnosis have also been found to make up information that is often inaccurate and scarier than the actual circumstances. “This superhero story helps de-mystify what’s going on in PID, in an engaging and non-frightening way. The British Society for Immunology is happy to endorse this book, the first of its kind to help reassure a child diagnosed with PID in a language and format they can understand”, says Dan Price, Education and Communication Officer at the British Society for Immunology.
MEDIKIDZ & THE REAL-LIFE SUPERHERO HELPING OTHER CHILDREN
Medikidz Explain Primary Immunodeficiency stars 11-year old Tom who, at the start of the book is looking forward to attending a comic book convention, but a cold, made worse by his PID, means he has to stay at home. Sensing Tom’s frustration and confusion, the Medikidz superheroes (each an expert on a specific area of the body) whisk him away to Mediland, a planet shaped like the human body. There, they take Tom on a journey through the bloodstream, where he learns more about the causes of PID and the effects on the body. The Medikidz help Tom understand normal components of the immune system, how these might be different in PID and explain treatment options, including the importance of compliance and taking preventative measures to stay healthy. Confident and reassured, Tom returns home with a better understanding of PID.
Tom’s mother, Kate Croall, explains:
Tom was thrilled to be chosen as a cartoon character. He loves superhero comics, and now he gets to be one himself! He is also of an age where he can recognize how such publications can help children to gain a better understanding of their condition and he is so delighted to be a part of that.
Co-Founder of Medikidz, Dr Kate Hersov, explains:
Medikidz was founded out of a frustration with the lack of child-friendly health information available when working as doctors in paediatrics. We work closely with healthcare professionals, families, children and patients to fully understand the needs of young people. Thanks to Tom, Bio Products Laboratory, PID UK, British Society for Immunology, UK Primary Immunodeficiency Network, and The Immunology & Allergy Nursing Group, we will be able to help children better understand PID and cope with the impact of the condition on their lives.