Hypermobile Ehlers-Danos Syndrome is a complex condition and it can be difficult for families to access useful information. This is why I was delighted to receive an email this week from author Claire Smith about her new book, ‘Understanding Hypermobile Ehlers-Danos Syndrome and Hypermobility Spectrum Disorder’. The book is fully referenced, reflects the latest information (following the […]
Author Archive | Julia
Caring For The Mother Ship
If you have a child who lives with a complex pain condition you will be a busy person. You’ll be busy with medications, appointments, therapies and helping your child cope with the everyday challenges that are coming at them. Under this sort of pressure it is easy to forget about looking after yourself. It can […]
Hypermobility Syndrome Website
I’ve just been sent a link for the Hypermobility Syndrome Association website. It is a fantastic website and has information about joint hypermobility, Ehlers-Danlos Syndrome (all types), Marfan Syndrome, Sticklers and Osteogenesis Imperfecta. I was particularly thrilled to see that the publications on sale include a Schools Guide. Robyn Hickmott from Risley Physiotherapy in Applecross, […]
Kids Pain Resource – PainBytes
There’s a great new pain resource developed in New South Wales specifically for kids, parents, siblings and carers to help understand and manage children’s pain. It is fantastic to see this sort of material being developed by the Pain Management Network. PainBytes is the specific project addressing pain in young people and it is much […]
How EDS Can Feel Like A Chain Reaction
I love it when people get in touch to let me know about what they’re experiencing. I recently got an email from Nicole to talk about what it is like to be 17 and have EDS. There is so much pressure on people to package their suffering. I feel it myself. If people ask me […]
Pool Party Hydrotherapy Programme For Girls with Ehlers Danlos and Hypermobility Disorder
A six week social and hydrotherapy programme for girls with Ehlers Danlos and Hypermobility Disorder is being run by Rocky Bay and Headspace Fremantle. It will commence at 10.00am Saturday 23 August at Rocky Bay Pool in Mosman Park and is $30 for six pool sessions. If you know anyone who wants to sign up […]
Recent Improvements in Pain Services In W.A.
I’ve just been reading the 2013 Painaustralia Annual Report and I am particularly impressed by the list of achievements for Western Australia. This list below represents a huge amount of work by a lot of people over several years. Many of those people are doctors and specialists who are working hard to improve the services […]
Finding Comfort After Your Child’s Health Crisis
I’ve been reading about pearls lately. I’m reminded that they are “what happens when an oyster or some other mollusk is irritated by the invasion of some disturbing intruder into its closed shell”… Pearls are layers and layers of soothing “nacre” intended to insulate the delicate mollusk from the irritant that has abraded it. At […]
Finding A Way Forward When You’re Feeling Overwhelmed
If you’re caring for a child with a chronic pain condition the pressures do tend to take on a predictable shape. See if you recognise any of these- Child Suffering I am distressed my child is suffering persistent pain. Medications I worry about the medications and their side effects. Finding Health Professionals I find it […]
Notes On Getting Through Painful Procedures
If you’re reading this post on a website about childrens’ pain, I think you’re going to recognise the feeling I’m about to describe. Yesterday I took my daughter for a set of x-rays. I was dreading it. As I expected, she was required to hold many different positions so that her joints could be accurately […]