by Barbara Zehetbauer-Hoehl, Vienna, Austria
Three years ago, I developed a symptom called foot drop caused by my FSHD Type 2. The biggest loss, which came with losing my muscles that support my feet, were the pretty shoes that I just wasn’t able to wear anymore. I love dressing up and I love shoes, so losing one tool to express myself and getting a big, black, bulky orthosis instead, was a horrifying feeling. Being able to walk properly with an ankle-foot orthosis, or AFO, was just not enough for me.
I have done a lot of research over the years to find a fashionable and functional AFO or shoe. Shockingly, there are very few options to choose from. Since I have a fashion background it was natural for me to create my own solution to the problem of functionality and beauty. And I instantly started designing myself the shoes I wish I could find on the market.
Creating a solution ended up turning into a two-part project. First, I needed to address the AFO itself. So, my first step was to create an orthosis that fits in my shoes and is very resistant while looking good. In my experience, the sole of the regular AFOs that I purchased broke every few months. I designed an AFO that fits the ankle tight so you can still see the natural shape of the leg. The straps that hold up the foot are replaceable so that I have more options to style my orthosis. In this picture, I went for satin and rhinestones. I worked with an orthopedic technician to make the sole of the orthosis very resistant and comfortable.
After improving my AFO, the next step was to create the shoes of my dreams. Beautiful shoes that I can walk in! It took time to think of how I could work to integrate an AFO in a shoe that looks nice with dresses. Also, finding an orthopedic shoemaker who was willing to work with my unique design needs was a challenge. Luckily, I found an amazing shoemaker who believed in my creation and the potential it had to help others.
To me these are not just a pretty pair of shoes. These shoes have given me back my life and love for dressing up. Redesigning and creating beautiful products that usually tend to create negative associations in the outside world, is a big change for people who are affected. Making a positive rather than negative first impression really helps people with disabilities to open up to the world again.
I am currently working on more styles and prototypes of shoes and AFOs, which I am constantly trying to make more comfortable and adapted to a wide range of people. I strongly believe we have a right for well-designed, beautiful, and functional shoes and orthoses. This has ignited a strong passion in me, and I hope that in the near future we can make these products accessible to all people with foot drop.
Editor’s note: Barbara Hoel is a fashion designer based in Austria. She would love to hear from readers who are interested in this topic. Her email is email@example.com. Barbara’s symptoms stated when she was 24 years old but she was not diagnosed until age 30. Now 33, she works as a design teacher and freelance fashion designer in Vienna. She studied fashion design in Vienna and Milan, during which time she had the chance to intern at the Metropolitan Opera and Jason Wu in New York. She earned a masters in art and design education from the University of Fine Arts in Vienna and is currently looking for a PhD program that will allow her to research the intersection of fashion and orthopedics, and to work further on the development of her shoes and AFOs. For a guide to finding shoes to wear with orthoses, read our blog post, Sole Searching.