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News, info, resources & informed opinion about Special Educational Needs, disability, children’s physical and mental health, rare disease. Campaigning to #FixSEND
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Category: <span>Ehlers Danlos Syndrome</span>
Home Health Archive for category "Ehlers Danlos Syndrome"

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Category: Ehlers Danlos Syndrome

What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
Ehlers Danlos Syndrome, Rare Disease, special needs

What’s in a name: Ehlers-Danlos Syndrome gets an important makeover

By Tania Tirraoro March 16, 2017 March 18, 2017

It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …

Read more"What’s in a name: Ehlers-Danlos Syndrome gets an important makeover"
A 16 year quest to diagnose our rare bendy daughter
Ehlers Danlos Syndrome, Guest Posts, Rare Disease

A 16 year quest to diagnose our rare bendy daughter

By Tania Tirraoro February 17, 2017 October 18, 2018

It’s often difficult to cope and find support when your child has an uncommon or rare condition. Often, there is little understanding by the GP and no more than that …

Read more"A 16 year quest to diagnose our rare bendy daughter"
The pioneering STARS putting patients at the heart of healthcare
Campaigns, Ehlers Danlos Syndrome, Health

The pioneering STARS putting patients at the heart of healthcare

By Tania Tirraoro August 27, 2015 January 23, 2021

Long ago, when my both my kids were under three and I was still perfecting the art of smiling while drowning (lest anyone should think I couldn’t cope with motherhood), …

Read more"The pioneering STARS putting patients at the heart of healthcare"
Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive
Ehlers Danlos Syndrome, Guest Posts, Rare Disease, special needs

Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive

By Tania Tirraoro February 11, 2015 June 30, 2016

One of the great things about having Special Needs Jungle for me, is getting to meet other women who also happen to have children with special needs. One such laydee …

Read more"Professional pleasantries: Why Jenny thinks complaining can sometimes be counter-productive"
Sons, Mothers and Ehlers Danlos Awareness Month
Ehlers Danlos Syndrome, special needs

Sons, Mothers and Ehlers Danlos Awareness Month

By Tania Tirraoro May 31, 2014 August 10, 2020

It’s the last day of Ehlers Danlos Awareness Month and, of course, I’ve left it to the last day to write anything about it. It’s not that I haven’t done …

Read more"Sons, Mothers and Ehlers Danlos Awareness Month"
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