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 challenge myself to achieve great things by completing the ordinary tasks well. The degree of difficulty I have behind the spring in my step is my twin daughters have Ehlers Danlos Syndrome, EDS, so my message to you all know matter how difficult some days get, I challenge you to make your ordinary day EXTRAORDINARY and add a dash of PINK into your world…I have entered the SMITH’S “Do us a flavour” competition here in Australia and I am hoping to become one of the four finalists. My original flavour is PINK Rock Salt. I will keep you all posted. PINK has a lot of meanings to different people, so what does the colour PINK mean to you?
Archive for the ‘Ehlers-Danlos & Hypermobility Disorder’ Category
Comedy for Comfort
August 28th, 2009 by Rona ChieraJust 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 hear words from people that don’t really fit in with your personality. We all hear those harsh words and it is up to us to to file what needs to be filed and take on board the best parts of those conversations to enhance our own D.N.A.
Living with E.D.S. is invisible and it plays on your mind, some days.
So today is the day that you take ownership of your D.N.A and build a platform for your personality. Greatness comes to those who have the desire to grab. WITH BOTH HANDS!
Check out this.
Ehlers-Danlos And Your Eyes
August 25th, 2009 by Rona ChieraThere 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 Discoll’s address on the ocular effects of Ehlers-Danlos Syndrome (EDS) at the Ehlers-Danlos National Foundation meeting in Houston last year.
Dr Discoll has Ehlers-Danlos and she was able to put together information that people with Ehlers-Danlos can print out and take with them to their eye doctor.
Follow this link to The Eye Doc Blog.
What Do We Know About Sleep And Ehlers-Danlos Syndrome?
July 26th, 2009 by JuliaAt our Wednesday group at the Arthritis Foundation some of us were discussing sleep patterns of our children.
The question was raised about whether difficulty waking was linked the Ehlers-Danlos Syndrome. I sent off an email to the Ehlers-Danlos Foundation in the U.S asking if there was an study into this.
My thanks to Susan Jenkins at the Foundation for sending us this abstract of some research conducted in 2006.
Here is the link to this Sleep Study.
Basically, the starting point of the study is the observation that people with EDS often complain of disturbed and non refreshing sleep.
The question the study explored was whether the sleep disturbance was related to chronic pain or a separate part of EDS.
The conclusion suggests that it might be a separate part of EDS and that more study would be needed to prove it.
So when a parent asks about whether the difficulty to wake her child may be part of the condition of EDS – I guess the answer is a tentative yes, probably.
Ehlers-Danlos List of Descriptive Phrases
July 3rd, 2009 by JuliaI have just launched the first entries in our list of phrases that kids with Ehlers-Danlos use to describe their experience.
There are two other lists that accompany this. The first are positive things that kids say about having Ehlers-Danlos. The second are things parents noticed when their children were small.
I think that even if one parent finds this list when they google a phrase like “heavy muscles” and is able to find early physiotherapy and some answers our little research project would have been worthwhile.
You can visit Ehlers-Danlos List of Descriptive Phrases and add your own using the contact form at the bottom of the page.
“My Muscles Feel Heavy”-How Children Describe Ehlers-Danlos
June 13th, 2009 by JuliaChildren with Ehlers-Danlos or Hypermobility Disorder struggle to put into words how they are feeling. This morning at our Saturday Jointpainrelief group a couple of the mothers talked about phrases their children used. Here is a few-
- “My bones feel like cement.”
- “My muscles feel heavy.”
- “I am sick of feeling so tired.”
These children experienced disadvantage at school because-
They might find it difficult to hold a pencil and write. This might lead to the conclusion that they are “slow learners”. They can’t keep up with class work and might be judged as lazy by teachers.
Discomfort makes it very difficult for them to sit still in class. They are often in trouble for fidgeting.
Many, but not all, children with this condition may lack co-ordination. This means that they are the last to be picked in team sports.
I heard of one case this morning where the child became so humiliated by her experiences at school that she became depressed and suicidal from a young age.
School can be a tough environment. Teachers under increasing pressure to get results can be frustrated by children who appear to be unco-operative.
Better information for teachers could lead to earlier diagnosis and physiotherapy for the child. It also could lead to a more understanding classroom environment.
I would love to collect all the phrases kids use to talk about the experience of Ehlers-Danlos. It is possible that parents may be searching with these very phrases to better understand what is happening to their child. Our list might help them find answers and help a bit earlier.
If your child has been diagnosed with Ehlers-Danlos or Hypermobility disorder please send me the words they use to describe how they feel – we will publish this list on our website.
Firstly, thank you for all your hard work and support over the years.
Please feel free to join us in building a helpful website. You can contribute from either a professional or personal perspective. Your insights will be highly valued.