What's Up with Lorraine? Medikidz Explain NP-C
By Dr Kim Chilman-Blair and Shawn Deloache
Published by Medikidz Publishing
ISBN-10: 1906935424, ISBN-13: 978-1906935429
Buy this book from Amazon UK
'What's up with Lorraine?' is a comic book about six superheroes - each with their own body-inspired superpowers - who live on a faraway planet called Mediland, which resembles key parts of the human body. The mission of these super-powered Medikidz is to 'put medical information about disease and medicines into plain language for kids, their families and friends'.
The main character is a girl called Lorraine who we learn has been falling over repeatedly, ultimately prompting her concerned mother to take her to the doctor. After rigorous tests, the doctors are still without a diagnosis for Lorraine. That's when the Medikidz step in.
Lorraine is magically transported to Mediland where she meets the Medikidz for the first time and is introduced to their host of intriguing 'talents'. For example, Skinderella can morph into a skeleton, Pump has superhuman strength and Gastro can propel himself through the air with his amazing flatulence.
Cringeworthy humour aside, the comic does a pretty good job of painting a picture of the biology of Neimann-Pick Type C (NP-C for short) - a rare inherited condition that affects fat metabolism. The book explains in simple terms the various parts of the body that are impacted by the condition, why it's often difficult to diagnose and how recessive inheritance can lead to someone with the condition being born to otherwise healthy parents.
The point at which I started to have reservations about the comic was when it came to addressing the degenerative nature of NP-C. Some of the symptoms, such as epilepsy, can be controlled, and exercise can help, but ultimately the disease is neurodegenerative, causing mental and physical decline and ultimately early death.
I feel strongly that such sensitive and potentially devastating aspects of the disease should not be discussed without a trained professional being present who can support the affected individual and their family, and be on hand to answer any questions they may have about the disease or their child's future.
To discuss these difficult topics in a comic book trivialises them and fails to recognise that different families will have different information needs and require different levels of support to cope with such potentially devastating news.
The comic also makes the assumption that the affected child will have family and friends around them who are in a position to support and care for them. But inevitably this will not be the case for every child, potentially leaving those lacking an appropriate support network or with parents who are struggling to cope, feeling abandoned and let down.
I believe the right time and place to discuss these issues should ideally be decided by a trained clinician, who will understand the family's individual circumstances and be able to deliver this information in a way that is both appropriate and timely. Even if the book is given as a follow up to issues discussed in a formal consultation, I would still be concerned about the families affected having the opportunity to ask questions about the issues raised.
I would feel more comfortable if the book advised Lorraine to speak to her doctor about treatments and what will happen as her disease progresses, rather than attempting to gloss over these issues in a way that makes them seem inconsequential. For this reason, I would not recommend it for affected families unless it is used as part of a consultation with a trained professional, where there is ample time to discuss the meaning of the book and ask questions.
Buy What's Up with Lorraine? Medikidz Explain NP-C from Amazon UK.