Global Genes Blog Editor Weighs in for HuffPo: How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness?

huffington_post

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 better time to explore how uncomfortable the tea parties with the skeletons who live in my closet go […]

Teen with Ehlers-Danlos Syndrome Defies Disease to Dance “En Pointe”

ballerina

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 toes to dance en pointe ballet being careful to keep her knees directly over her shoes. If not, […]

“I Never Knew 24/7 Pain Wasn’t Normal”: Ehlers-Danlos Patient Gets Diagnosis Late in Life

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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 usually had only one. What I’m saying is that this technology revolution happened just as I was entering adulthood. […]

Ehlers Danlos Syndrome 6 Spells Multiple Problems for Dagmara

Diagnosed in her mid-thirties, Dagmara has shocked doctors.

I have Ehlers-Danlos syndrome. One name. A thousand problems. It started when I was born. The doctors said I was a “floppy” baby–which generally indicates a form of autism. But I was also born with hyptonia, scoliosis, dislocated hips and breathing problems. So the warnings of […]

It’s (Not) All In Your Head: Ehlers-Danlos Patient Learns Childhood Quirks Were Warning Signs for Rare Disease

Yvonne has finally found a doctor who can manage her pain, and life seems pretty good!

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 freak show as a child. My friends all wanted to see the tricks I could do. It was all fun and […]

Fundraising Through Friendship: A Friend Raises Awareness for Ehlers-Danlos Syndrome Patient

Two friends show their support for the patient advocacy foundation, Ehlers-Danlos Support UK.

“Physically Weak But Mentally Stronger,” is the philosophy that helps me live my life. At the age of four, I was diagnosed with Ehlers-Danlos Syndrome (EDS), type 6A, a rare and genetic condition that affects me every minute of every day, making ALL tasks a struggle. […]

Bracelet Recipient, Lisa Auerbach Shares Hope While Battling Ehlers-Danlos Syndrome (EDS)

Lisa Auerbach, battling Ehlers-Danlos Syndrome (EDS) made these bracelets to show her support for others with a rare disease.

Lisa Auerbach cherishes the Hope bracelet she recently received.  Lisa is battling Ehlers-Danlos Syndrome(EDS), a connective tissue disorder which affects every system in the body.   Lisa’s symptoms include dislocating joints, Postural Orthestatic Tachycardia (POTS), severe headaches and pain.  She will most likely need significant […]