Ringaskiddy lady Sarah O’Driscoll has published a book for her son, Jack. Here she tells us her story on how the project came about.
My Name is Sarah O’Driscoll, I Live Locally in Ringaskiddy and I'm a mom to a wonderful 7-year-old boy called Jack and our two cats Kevin and Marie. Late Last year after some investigations into some difficulties Jack was facing, He was diagnosed with a Rheumatological condition, a connective tissue disorder called Ehlers Danlos Syndrome.
EDS is a disease that weakens the connective tissues of your body, and can make your joints loose and your skin thin and easily bruised. It also can weaken blood vessels and organs. Joint hypermobility, which is one of the main Symptoms of EDS classified using the idea of a spectrum.
At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. At the other end of the spectrum is hypermobile EDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD).
As a Mom, I saw Jack struggle over the last few months with the diagnosis, and in addition, He has had to spend a lot of time with occupational therapists and physiotherapists either in person or working on his treatment plan at home. I went looking online for a child-friendly book I could buy to help him understand a little bit more and know he is not alone.
After a lot of searching, I couldn’t find anything relevant for his age group. There were books on EDS and HSD for older children, but these were heavily detailed and not suitable for a simple explanation for a younger child. When I couldn’t find anything, I decided to sit with Jack one day as an exercise and we came up with our own story that he could tell other girls and boys. – and this is where HSD and Me was born.
HSD and Me is a rhyming children's book, aimed at 3 to 7 year-olds, who have been diagnosed with Hypermobility Spectrum Disorder. For parents, caregivers, and children alike, it can seem a bit scary to be diagnosed with HSD, and maybe you are wondering "is there anyone else like me?"
Well, meet Jack! Jack is a young boy with a recent diagnosis and in this book he describes the ups and downs of life with HSD in an upbeat and child-friendly manner.
Our book is published as a paperback and on Digital E- book format.