It’s Easter Sunday morning and we’ve just finished the Easter hunt in our front yard. As I took photos I noticed an email had come in from Sara.
She has sent in a phrase her 10 year uses to describe the experience of living with Ehlers-Danlos & Hypermobility Disorder.
“It’s like my legs are being sat on and crushed by an elephant”
For a couple of years now parents have been sending me contributions to our our Ehlers-Danlos Descriptive Phrases project.
I started the project because parents told me it can be difficult for children with EDS to get a diagnosis.
I decided that I would publish the exact words of each child as the heading for a blog post. As Google indexes these headings they each become a searchable term.
The more phrases published, the more chances puzzled parents might find clues during their late night Google searches.
We are also building a useful resource for medical professionals who may want to understand EDS from a child’s perspective.
This list has grown steadily and I feel very emotional when ever I read it. The phrase I am adding today brought tears to my eyes.
So thanks to Sara for getting in touch and helping to grow our understanding of EDS. All the best to you and your family this Easter.
If you’d like to see our full EDS descriptive phrases list and add your own contribution visit How Childen & Teenagers Describe Ehlers-Danlos.