Archive for the ‘Caregivers’ Category

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Five Considerations for Supporting People with EDS

Posted on June 2, 2013

Natasha discusses Ehlers-Danlos Syndrome and the support we need to manage this disorder.  Scroll down to read the “Five Considerations for Supporting People with EDS” (Published on the Huffington Post) by Natasha Lipman Hands up if you’ve heard of Ehlers-Danlos Syndrome? Chances are if you actually have EDS, you’d be a bit wary of thrusting your […]

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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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It’s (NOT) All in Your Head!?

Posted on May 11, 2013

Submitted by: Yvonne Spitek  – The Global Genes Project How many times have we heard that expression or saw that “look” indicating that a medical professional did not have a clue about our condition?! It’s all in your head… or I don’t “see” anything wrong with you. That is all I heard for many years. I was […]

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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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Community responds with support for ill resident

Posted on April 27, 2013

This Ohio community has been very supportive of Andy, who has Vascular Ehlers-Danlos Syndrome. This is the most life-threatening of the 6 types of EDS. CELINA – A young man beset with an incurable disease is not alone in his medical struggle. By William Kincaid   The Daily Standard   Celina, Ohio   “The community has responded […]

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Family of Annabelle, 4, raises awareness for Vascular Ehlers-Danlos (VEDS)

Posted on April 26, 2013

Annabelle’s family is thankful that she was diagnosed early. But, that is only half the battle. The four-year-old is at high risk for ruptures, arterial bleeding and other serious complications that may occur without notice. Her family is very supportive, and raises awareness for Vascular Ehlers-Danlos (VEDS). 10:47am Friday 26th April 2013 in News By Tui […]

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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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