Tag Archive: hypermobility

My HSD diagnosis made me feel more hopeful than ever

It all started in my last year of high school. I had suffered from headaches and migraines my whole life, but when I was 17 I got a headache that wouldn’t disappear. I went to doctors, physiotherapists and dentists: they treated my with acupunture and tried to pull my teeth out. The first tooth split […]
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Our discovery of vEDS

Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17 times within the first 3 months of her life. One morning, 3am Effie woke up screaming, she had a seizure and turned stiff: we called […]
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I wish someone had connected the dots sooner

My first symptoms of hypermobility spectrum disorder (HSD) were simple and seemingly harmless. I was super bendy. I could do all sorts of contortions and party tricks. As I got older however, each year came with more problems. By age 10 I was having chronic nausea, and by age 11, my first symptoms of Postural […]
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While there is life, there is hope! 

My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc on my body. It wasn’t until a virus came a few years later that left permanent damage. I was diagnosed with hypermobile EDS (hEDS) in […]
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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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I have clEDS, but I will not let it have me!

EDS…Ehlers-Danlos syndrome…until a casual conversation in 2016, on the sidewalk in front of my home with my back-yard neighbor, I had never heard of the acronym or the condition. I had recently suffered full ATFL and AITFL ligament tears in my right ankle, from a typical walk from the mall to my car. Being in […]
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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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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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