Edinburgh parents helped develop the book, which supports adults to discuss MS with their children
A free children’s book aimed at supporting families to discuss multiple sclerosis (MS) has been launched by the UK’s leading charity for people affected by the condition.
The MS Society’s ‘What is MS to me?’ book features Tingo, a nerve cell, who helps young children understand MS with kindness, curiosity, and play.
The national charity created the book alongside a group of people living with MS and healthcare professionals including Dr Alison Thomson from Queen Mary University of London. Playful illustrations are provided by Margie Sturton.
There are around 150,000 people living with MS in the UK, more than 17,000 of whom live in Scotland, and 135 people are diagnosed each week. Many of these will have children or go on to have children in the future.
The MS Society found that outside of medical outreach programmes like Digesting Science, there’s was little available for children in the UK to help them understand and accept an MS diagnosis in their family.
Tingo guides readers through what they know about MS and encourages them to ask questions and make notes and drawings. A limited-edition Tingo toy was given away with some of the first books sold after its launch on Monday 28 July. The Tingo soft toy is a safe haven for children to return to during conversations about MS. Readers can pick Tingo up and keep them close for comfort and reassurance.
Robert Oldham, 45, from Greenbank, Edinburgh, was diagnosed with MS in 2005. He was part of the group of people who helped create ‘What is MS to me?’
Robert says: “As the father of three kids I know how important it is to explain MS to children in a simple, non-scary way so that is why I wanted to help create something that fitted this.
“I’ve had MS for 20 years and our eldest is 15, so all the children have grown up knowing that daddy has MS, but that’s just a badge. They don’t necessarily understand what that means. They know that I get tired, and can’t walk that far so being kids, they just accept that.
“The book has been great for my youngest who’s nine. We read it together and then I ask her if she has any questions she wants to ask. She loves to read and found the book engaging and helpful.”
Sian McSorley, 57, from Corstorphine, Edinburgh, was also involved in the production of the new book. She was diagnosed with MS in 2017 and her symptoms include fatigue, pain and cognition issues.
She says: “From my own experience I wasn’t sure how to explain MS to my daughter without frightening the life out of her. I couldn’t find anything that could help me with that.
“Being part of the group was a great opportunity to get Cara-Maria involved too. She was able to help with the information and designs, and it really helped to normalise MS for her a little.
“We talk about MS quite top level, that it’s something that makes me tired and she accepts that. But this book will be great to explain what else can happen in MS. It’s great that we can also share this resource with other people.”
The MS Society is the UK’s leading charity for people affected by MS. For 70 years it has been at the forefront of support, research, and campaigning to improve the lives of people with MS.
Gavin Atkins, Executive Director of Services and Support at MS Society, says: “We worked with an amazing group of people living with MS to create this book. We found that there was a need for families experiencing MS to have something tactile to help explain and explore the condition.
“Most people are diagnosed with MS in their 30s or 40s and many of those will already have children or be thinking about starting a family.
“We’re proud to have created this free resource to help adults have what can be difficult conversations with the children in their life. We hope this book and Tingo will be something families can come back to time and again to learn more about MS and make it easier to talk about.”
You can order your free copy of ‘What is MS to me?’ at :
Like this:
Like Loading…