Tag Archive: Diagnosis Journey

tarryn is wearing a neck brace, and standing with her hand on her hip

I am ready to stand strong as an advocate

The rush of feelings like bubbles during the first pour of champagne. My heart beating as though I am running the NYC marathon (a dream that will always remain a dream). Still very unsure which letters to use as I am perplexed on what words to even begin with. Never have I felt so vulnerable
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Barbara sits in front of her wheelchair, with a dog sat in her wheelchair, and a horse stood on a block behind her

My life finally started after diagnosis

It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was
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genevieve is taking a selfie, while holding an IV pole

My lightbulb moment

The first sign that something was wrong was my ankles. Anyone walking behind me could see that my feet wobbled as I walked. As a kid, I didn’t realize this was wrong, and I thought that everyone’s feet hurt after walking for 15 minutes. I went to the doctor, and they told me to get
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Being able to use my scooter to increase my independence and enjoying frozen yogurt with my amazing and empathetic son, Daniel.

Lost Identity

CW: Contains discussion of miscarriage and suicide I have always been a planner. I knew at a young age that I wanted to be a dietitian and fulfilled this goal through hard work and dedication. I married my first love and I was the first of my friends to marry and the first to have
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a selfie of mirna smiling at the camera

I was diagnosed with cEDS after a lifetime of symptoms

I have been dealing with chronic pain for a long time. I had a long journey looking for answers. I was finally diagnosed at age 49, in April 2019, when a genetic test confirmed classical Ehlers-Danlos syndrome (cEDS).  When I was little I remember the pain in my legs and feet after any activity, and
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My bladder journey

“Hi, I’m @uniquely_jeantique and for Urology Awareness Month I’m going to tell you a bit about my bladder journey! I have hEDS and bladder complications are one of the many comorbidities I struggle with, but for years I was told I “just” had interstitial cystitis and was dismissed by doctors who didn’t take any of
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Rebekah has blonde cropped hair and looks into the camera, wearing tortoiseshell glasses, a black shirt, and a dreamcatcher necklace.

I will never be the same as before, but I am definitely NOT less

My name is Rebekah. I am a former professional vocalist and theatrical performer. I am a travel expert, travel designer, and marketing manager, mother of three amazing sons, and wife to the most supportive husband in the world. My life was going pretty well until seven years ago. We were in a car accident. Our
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Sara J playing the flute

A musical spoonie’s journey

Little did I know that my flute career path would essentially be stopped in its tracks before I had an opportunity to really get going. By all accounts everything was in place. I was all set. I had the best teachers. I was at my dream school of music. I made it! I am a
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