Tag Archive: Coping

The Ehlers-Danlos Society Launches its 2019 Global Learning Conference in Nashville, Tennessee

NASHVILLE, TENNESSEE , July 31, 2019 – The Ehlers-Danlos Society presents its Global Learning Conference in Nashville, July 30th-August 2nd. The 2019 EDS Global Learning Conference features both local and international experts and brings together the world’s largest gathering of people with Ehlers-Danlos syndromes and hypermobility spectrum disorders, patients, families, caregivers, and health professionals for […]
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vEDS, you picked the wrong person

November 8, 2017, was the beginning of my journey with vascular Ehlers-Danlos syndrome. I label my event as an attack, because it was just that, but I survived the war this disease has started with me. My attack caused both of the arteries in my kidneys to dissect, along with a couple of aneuryms throughout […]
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HSD is different, not less

I’d always been hypermobile as a child and used it to my advantage as a ballet dancer, but I was forever in pain and getting injured. We was always told by doctors that it was just growing pains and “double jointedness” is common in children. I then moved away and started university. Whilst I was […]
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The daily challenges of arthrochalasia EDS 

My name is Sue, and I live in Melbourne, Australia and I have arthrochalasia EDS (aEDS)/Osteogenesis Imperfecta. My diagnosis was confirmed by genetic testing in the USA, and diagnosed by The Austin Hospital Genetics Department here in Melbourne. I also have a very rare anyuresum, growing since birth called a Dehiscence High Ridding Jugular Bulb. […]
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The long road to diagnosing HSD

It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease. It proves extremely difficult for […]
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Musculocontractural EDS: My puzzle pieces put together

I have no idea what it’s like to live with an invisible illness. I’ve never been questioned for using my disability permit, and no one has doubted the pain I was in. A hidden blessing for a very visible disability! When I was born 8 weeks premature by emergency caesarean, the doctors and Mum and […]
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Baya is Zebra Strong!

This zebra’s name is Baya. She is passionate, strong and confident and and does amazing things. She is a swimmer, although you can imagine with hypermobile EDS the worry is there that something will happen. While she is super flexible, acid reflux is her huge hurdle. She has struggled since she was born with reflux. […]
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The day will come when all medical professionals know about vEDS

I’m 66 years old and have vascular Ehlers-Danlos syndrome. Anyone familiar with this EDS type understands how blessed I am as the median life expectancy is 48 years. My vEDS life began 22 years ago, although I didn’t know it at the time. On Christmas Eve in 1996 I began having abdominal pain around 6:00pm. […]
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I’m thankful for my early diagnosis

My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises. […]
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If only people understood

I’m Spencer, I’m 16 years old, and I have hEDS. I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there with EDS. My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was […]
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