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, […]
Archive | Ehlers-Danlos & Hypermobility Disorder
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 […]
Kids, Sport and Ehlers Danlos Syndrome – a Mum’s Perspective
I have two children with EDS and I thought it might be useful to share some of the ideas we have worked out for ourselves. We’ve come up with a flyer that can be given to the teachers who supervise school sport. This information is probably just as useful for any child managing an ever-changing […]
What To Tell School About Your Child’s EDS
We get a lot of email about the challenge of dealing with schools. I know from experience it can be a bit complicated. Teachers have bigger classes and ever increasing pressures. To help work out the best approach we’ve invited Michelle O’Sullivan, Occupational Therapist from HypermobilO-T to share her thoughts on what to tell schools […]
Ehlers-Danlos & Hypermobility Disorder Resource
I’ve recently had an email about a new website by Sydney based OT Michelle O’Sullivan. She is an OT specialising in hypermobility conditions and connective tissue dysplasias. Michelle has Ehlers Danlos Syndrome and has decided to use her OT training and her condition to benefit others. You can check out Michelle’s website at HyperMobilOT.
A Child With Tired Legs?
We have had another contribution to our collection of phrases children use to describe how Ehlers-Danlos makes their body feel. This set were sent in by Tina who has a three year old with EDS Hypermobility. “My legs are tired” “They (my legs) just need more rest” “My legs need more food” “My ankles are […]
Why A Young Person Would Feel Old?
Some time ago I started a project collecting the exact words children and teenagers use to describe what it feels like to have Ehlers-Danlos. I was motivated because children can go undiagnosed for many years. This means that they may not get the help they need. Secondly, technology has changed. Anxious parents now sit at […]
My Whole Body Hurts – Mild Ehlers-Danlos
Some time ago we started collecting words and phrases kids use to talk about how Ehlers-Danlos makes their bodies feel. This week I had another comment from a mother in the US. In this Michele talks about her experiences at school and how Sure Steps has helped. As I have never heard of Sure Steps […]
Ehlers Danlos Diagnosis Can Lead To A Community
Thank you for our diagnosis of Ehlers Danlos Syndrome – hyper mobile joints. I know we belong to an amazing group of people. What is so amazing about our community of EDS families and sufferers is that you cannot always see the pain and suffering. You can’t see the work that goes on behind the […]