Tag Archive: Coping

I did not get answers until I advocated for myself

Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s […]
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Dear Warriors…..

Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began […]
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cVEDS | People need to hear my husband’s story

My husband has Ehlers-Danlos syndrome. He was the typical case that wasn’t caught until he was older. When he was about 20, he swatted at a wasp and his arm dislocated. The surgeon that did the surgery knew there was something more going on because of the severity of the tips and tears. It was […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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Fighting for my validation for my child

My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset your brain. Your brain sends the wrong signals and we will treat that.” Because I did not agree with the rehabilitation doctor, I was almost […]
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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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How clEDS has changed me since diagnosis

Before I was diagnosed with EDS at the age of 37, I would have described myself as outgoing, friendly, brave, trusting and strong – but it wasn’t until now, 3-5 years after being officially diagnosed, that I consider I truly know what these words mean. I wanted to be resilient and courageous, pushing healthy boundaries […]
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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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My kEDS-FKBP14 diagnosis changed my life

After 24 years of searching, countless genetic tests and doctor appointments, I was given my diagnosis of  kyphoscoliotic Ehlers-Danlos syndrome-FKBP14 variant (kEDS-FKBP14). That day, I not only got a name for the condition that plays such an immense role in my life, but I got a tool: I got a name, a word, to help […]
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