Archive for the ‘Parenting’ Category

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“Stand up” for Ehlers-Danlos Awareness – A motivational message…

Posted on May 24, 2013

It’s May 2013, and Ehlers-Danlos Awareness Month is here again.  This EDSer will motivate you to spread awareness in your sphere of influence. If each one of us speaks up whenever we can, it will make a difference. We encourage you to stand up for EDS all year long. Published by Beth “It is May again; time […]

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Listen to a song about EDS Awareness

Posted on May 18, 2013

A song written about EDS awareness.  “The Cure”. Please listen and share. This talented songwriter has Ehlers-Danlos Syndrome, Hypermobility type. Click here for original source of video We appreciate your Likes and Comments

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TV show portrays EDS experience, ensures accuracy

Posted on May 10, 2013

By Mike Pyle  for Your Local Guardian.co.uk British soap opera “Coronation Street” casts Cherylee Houston to play the character Izzy Armstrong, who has Ehlers-Danlos Syndrome. The show consults with Michelle, an EDS parent, to ensure an accurate portrayal of the disorder. A mum who suffers from a rare illness has been helping make sure the bosses […]

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Primary School Children with Ehlers-Danlos Syndrome

Posted on May 9, 2013

EDS affects individuals of all classes, ages and nationalities. It is particularly disheartening to see children struggling with this condition. by Jenny; Cheetahs In My Shoes & Just Photos By Me “It must be really hard being a SENCo (Special Educational Needs Coordinator) at a Primary School.  On top of your normal teaching and management […]

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EDSers Need to Speak Up to Doctors

Posted on May 8, 2013

Many Patients with EDS are struggling with finding medical practitioners who will take the time to understand their condition.  This article urges you to be assertive and be an advocate for yourself. USA Weekend article: Illustrations – Luis Alvarez/Getty Images Written by Cheryl Alkon “About 100,000 people die each year due to medical errors, largely from misdiagnoses, […]

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Mum and Daughter Have an Extra Special Bond that No One Can Break

Posted on May 5, 2013

This UK family is dealing with Vascular EDS which is one of the 6 Types of EDS  identified.   By Helen Rae  Chronicle Live     “Mum Danielle Wilks and her daughter Lilli-Mae have an extra special bond that no one can break. The pair have the hereditary condition vascular Ehlers-Danlos Syndrome (EDS), a rare […]

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Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

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When EDS Strikes Families

Posted on April 5, 2013

By Sandra Strege-Mims Barr,  PhD. Sandra Leads the Ehlers-Danlos Syndrome Local Support Group in Dallas, TX. We will be looking today at the impact that a diagnosis of Ehlers-Danlos Syndrome has on a couple or a family. Most families proceed through day after day earning money from one or two incomes, using that money to […]

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