Fashionista Fesses Up to Ehlers-Danlos

When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her–plus, being short in stature, she saw them as a quick fix to at least look taller. Another plus? She found them unbelievably fashionable and the fashion world was where she wanted to end up, eventually.

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Not only did spike heels give Angela that je ne sais quois attitude she wanted… they also made her taller! [Source: giphy]
Fulfilling that dream, she found a job in the fashion industry where eight years flew by in a blur of designer handbags, outrageous heels, and a social life to die for. For Angela, her worst nightmare centered around losing the lifestyle she had worked so hard to achieve.

But in her late twenties, those fears began to materialize. She noticed every time she slipped her foot into a stiletto, her foot became engulfed in pain. Angela did what every rabid fashionista would do: She tried to ignore the pain away.

Slowly, her footwear began to betray her secret, as her heels disappeared into ballet flats. At first, nobody noticed. Angela kept her feet hidden beneath her desk, but when she began appearing at social events in flats, her colleagues began to comment, and Angela reluctantly recognized her high-flying days were becoming more and more grounded by her inability to tolerate the pain that was occurring, without fail, every single time she tried to wear her fabulous heels.

Things went from bad to worse when her legs began swelling.

She saw several doctors, but none could pinpoint the cause of her now-chronic pain. Her symptoms mimicked those of arthritis, but blood tests ruled that out. Walking became an event unto itself, and she was forced onto the sidelines at high-profile parties, champagne glass in hand, while dreaming of soaking in a hot bath and then getting into her pajamas. Her 219 pairs of shoes languished in her closet, and the career she’d so carefully crafted was crumbling around her.

So while still in the industry, she started to write about the latest fashion trends. It was her way of staying connected to the industry–and because of her natural talent as a writer, the column she created took off and gained national syndication in the United Kingdom. Her quirky sense of humor attracted a legion of fans. At one time she wrote about the glamour of working in fashion saying “I work in fashion. I like the way that sounds. Glamorous. No point revealing I make herbal tea for skeletal models and scoop up dog poo.” 

After securing a publishing contract, Angela revealed she suffers from Ehlers-Danlos syndrome (EDS), which in some cases is characterized by hypermobility of the joints and elasticity of the skin.

She is receiving treatment for it, and her health has stabilized. Today, she still wears flats, but she hasn’t given up on her sense of style. Because she sometimes uses a cane as a mobility device, she made sure to buy several in various colors to always match her wardrobe.

Angela is proud of her achievements, but she loves working from home. It allows her to better deal with her medical condition while still maintaining her sense of humor.


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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