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 […]
Author Archive | Rona Chiera
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 […]
Ordinary is EXTRAORDINARY
The ordinary is the new extraordinary. Have you noticed that the ordinary things that we do are now seen as extraordinary.I am a housewife and everyday I take the steps of becoming extraordinary in doing just ordinary things. Being a housewife I treat each day like I have a spring in my step and I […]
Comedy for Comfort
Just in case you were feeling a little down today, just sit back, relax and have a laugh with Dustin from Washington D.C. Dustin called me today from D.C. and wanted to share with me what helps him get through the day. Dustin Wood lives with EDS too and sent a YouTube link. You may […]
Ehlers-Danlos And Your Eyes
There is a world of difference between information about a condition that is text book and information that is written by someone with personal experience. Sometimes you get lucky and you find a professional with personal experience. I recently came across a great blog post on The Eye Doc Blog that talked about Dr Diana […]
OMG thank you OM4
Thank you Glenn of OM4, who is a custom designer of business websites. Today Glenn inspired our group of young people, all with varying degrees of joint problems. He showcased to our our children their employment opportunities in the new online ecomomy. Computers and the world wide web have opened the doors so widely that […]
Home and Away Dads
How do Dads stay connected and feel involved when their children are in pain? Each family will have a different approach. Let me share with you how my Hubby stays connected. Now before I tell you what he does I will describe him. He is my big strong Italian man with a soft centered […]
Jolly Good Julia!
From one simple conversation with Julia the first time we met at group physio lessons at Kidz Clinic early 2009, to now, a fully operating website for people with joint pain, who want some relief, by finding out where to go or to listen to others. Before this group session I had not met others […]
The Mother of All Jobs
As mothers we can fall into a pattern of trying to please or appease others. Maybe we learnt this from our mothers. I think this pattern can be especially true for the hard working home based mother. If your child has a complex medical condition your list of people to please might go something like […]