Posts Tagged ‘Ehlers-Danlos syndrome’

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Ehlers Danlos Diagnosis Can Lead To A Community

May 17th, 2010 by Rona Chiera

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 scenes to keep our families well.

Sometimes we cannot cuddle our girls as they are just so sore, but we keep upbeat with our own language of love.

We have sparkle time with our eyes. What fabulous communication secrets can you share with our other families?

My girls and I now have a name for the odd things that have been happening to them over the years. This is just great.

We know where we belong. We belong and you do too.

Welcome to our hyper mobile, Ehlers Danlos community.

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Posted in Ehlers-Danlos & Hypermobility Disorder | No Comments »


“Excuse Me Miss” – Why Don’t Kids Get Heard At School?

April 25th, 2009 by Julia

It is not always easy for children to avoid unsuitable activities at school.

It is not always easy for children to avoid unsuitable activities at school.

This morning a group of mothers were chatting at hydrotherapy about problems their children faced at school.

Children with Ehlers-Danlos syndrome who had been told by doctors not to participate in certain activities were still being forced to join in.

“Why didn’t you say something?” parents wanted to know. The children all said they had tried to say no and give their reason, but the teacher just would not listen.

This same theme came up again and again.

Children are not believed.

School notes don’t seem to work because teachers can be different from week to week.

My sister is a teacher.  She told me that so many kids try to get out of sport that teachers become deaf to excuses after a while.

In several of the stories the children suffered painful injuries as a result of being forced into unsuitable activity in the classroom as well as on the sports field.

For these parents I was speaking to, an injury to their child had a big impact.  It might mean having to take time off work.

It could also mean visits to hospitals, doctors or physiotherapists,  medications and watching their kids in extra pain that was avoidable.

It makes me think that this problem could be addressed on several fronts-

  • arming rheumatology kids with assertive skills training
  • developing letter templates that help parents get their message across
  • perhaps a medical alert tag/bracelet could be developed for arthritis kids

I’d be interested to hear whether you have had problems like this and what strategies you have tried.

Netball photo courtesy of tompagenet at Flickr Creative Commons.

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