Tag Archive: Ehlers-Danlos syndrome

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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Pashondra has her port accessed in hospital, wearing a face mask, due to complications from Ehlers-Danlos syndrome

I choose to be a local activist for awareness and change

My name is Pashondra James, I am 45 years old and from NC. I am the mother to two beautiful angels, Myecia Abri and Aric Isaiah James who passed away at birth due to EDS related complications. I did not know until 2011 that I was fighting a genetic illness called hypermobile Ehlers-Danlos syndrome (hEDS). […]
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quinn j story

YouTube helped me to advocate for a diagnosis

My name is Quinn and I’m just like you. I love to be with my friends, I love to cook, create art, and be in nature. I have a fascination with decorative skulls and an obsession with collecting flavored chapstick. I have lived with chronic illnesses my whole life. I was born with a urea […]
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valerie story

Spending my childhood in PT gave me my passion

My name is Valerie, you can reach me at the @bendybodyblog! I’m about to be 23 and currently in graduate school, studying for my doctorate in physical therapy! I have Ehlers-Danlos syndrome (EDS), Postural tachycardia syndrome (PoTS), celiac disease, chronic migraines, eczema, asthma, and suspected Mast Cell Activation Syndrome (MCAS). Throughout my studies and activities, I […]
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breaking down barriers lori's story

A message to my fellow young zebras

Hello, my lovelies! My name is Lori, I’m 19, and I’m the founder of and writer at the blog ‘From Bud to Bloom’. It is all about my journey towards self-love and self-fulfillment as someone with chronic illness and mental health problems – I also happen to battle with hEDS, PoTS, ME, scoliosis and hip […]
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tess story

I will never let my pain or GI issues beat me

My name is Tess.   I’m 27 years old and I love life, I really do. Everything about it – people, animals, my pets, our beautiful surroundings, even my mind, and body… of which my body is pretty defective. When I was 15 years old I hit puberty and my life was shaken up. I always […]
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EDS ECHO celebrates its first anniversary

EDS ECHO is tackling several key issues facing patients with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD): supporting clinicians in increasing their knowledge; helping clinicians network with each other to discuss care; increasing access to care by increasing the number experienced clinicians, and supporting community advocates in raising awareness of EDS and HSD. […]
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