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Tag: Ehlers-Danlos Syndrome

A total of 16 posts are filed under Ehlers-Danlos Syndrome
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An Inside Look: Dealing with Dercum’s Disease
I’m a 37 year old woman of four children. Eight years ago I started to notice my body was in pain a lot. Slowly, year by year, that… Continue Reading
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Global Genes Blog Editor Weighs in for HuffPo: How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness?
I don’t generally go into the long and sordid story of how me and the majority of my family get on with my chronic illness. But what… Continue Reading
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Teen with Ehlers-Danlos Syndrome Defies Disease to Dance “En Pointe”
Sarah Sutton glides across the floor as if dancing is a natural act for her. It is anything but. With extreme care, Sarah steps up on her… Continue Reading
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“I Never Knew 24/7 Pain Wasn’t Normal”: Ehlers-Danlos Patient Gets Diagnosis Late in Life
When I was a child, there was no internet. There were no smart phones. Very few people had computers in their homes, and even then, they… Continue Reading
Diagnosed in her mid-thirties, Dagmara has shocked doctors.
Ehlers Danlos Syndrome 6 Spells Multiple Problems for Dagmara
I have Ehlers-Danlos syndrome. One name. A thousand problems. It started when I was born. The doctors said I was a “floppy”… Continue Reading
Yvonne has finally found a doctor who can manage her pain, and life seems pretty good!
It’s (Not) All In Your Head: Ehlers-Danlos Patient Learns Childhood Quirks Were Warning Signs for Rare Disease
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 a… Continue Reading
Two friends show their support for the patient advocacy foundation, Ehlers-Danlos Support UK.
Fundraising Through Friendship: A Friend Raises Awareness for Ehlers-Danlos Syndrome Patient
“Physically Weak But Mentally Stronger,” is the philosophy that helps me live my life. At the age of four, I was diagnosed with… Continue Reading