Wikipedia defines diagnosis like this – Diagnosis (Greek: διάγνωση, from δια dia- “apart-split”, and γνώση gnosi “to learn, knowledge”) is the identification of the nature of anything, either byprocess of elimination or other analytical methods. I find the “apart split” bit accurate. That is how you feel isn’t it? Split apart with information that your child has a condition […]
Archive | Ehlers-Danlos & Hypermobility Disorder
“My Brain Hurts” – One Child’s Message To Mum
Some time ago I started a list of comments from children who had Ehlers-Danlos in the hope that that list would lead to early diagnosis for other children. I have had several emails and I have been adding to the list. Here is the latest comment sent to us. “This is great information for me. […]
Pediatrician’s Guide to Ehlers-Danlos
Every time I meet a parent whose child has Ehlers-Danlos they tell me how many years and doctors it took to finally get a diagnosis. This condition is not widely known or understood just yet. Armed with the right resources each of us can help educate doctors about the care of children with Ehlers-Danlos. 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 […]
What Do We Know About Sleep And Ehlers-Danlos Syndrome?
At 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 […]
Ehlers-Danlos List of Descriptive Phrases
I 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 […]
“My Muscles Feel Heavy”-How Children Describe Ehlers-Danlos
Children 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 […]