My struggle to find a suitable knee brace with hemophilia and EDS

Why we need greater innovation in the world of medical support devices

Jennifer Lynne avatar

by Jennifer Lynne |

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About a month ago, my world was turned upside down when my kneecap dislocated while I was simply shifting my leg on a recliner. This unexpected incident brought back memories of my teenage years, when I underwent two surgeries to keep my kneecap in place.

To add complexity to my situation, I live with hemophilia B, von Willebrand disease, and Ehlers-Danlos syndrome (EDS) — a perfect storm of factors contributing to my ongoing knee problems. Not only did the dislocation cause excruciating pain, but it also triggered bleeding and swelling.

Wearing a knee brace in my youth was necessary to prevent kneecap dislocations, but it came with its own set of challenges. My memories of that time are not fond, as the brace made me both uncomfortable and socially awkward.

Fast forward to my recent knee dislocation, which threw me back into the wacky world of knee braces. A visit to a physical therapist for a brace resulted in a sense of déjà vu as I was handed a device identical to the one I wore some 40 years ago. To my surprise, no innovations or design improvements seem to have occurred since the ’80s. I couldn’t help but point this out to the physical therapist, who appeared to be around my age, and he agreed with my observation.

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A sizable predicament

Unfortunately, my recent experience with the brace mirrored my teenage memories. The problem lay in the sizing, or maybe that I’m a woman and these braces are made for men. My calves are disproportionately large compared with my thighs. My calf requires a large size brace while my thigh needs a medium. Yet the available braces don’t cater to this difference, causing the large brace to slip down my leg constantly.

This slip results in painful pressure on my knee, ironically exacerbating my pain rather than alleviating it. It’s bewildering that the same brace may be used for individuals as diverse in size as 5-foot-3 me and a towering 6-foot-5 man.

Returning to the physical therapist for a medium-sized brace only added to my frustration. While he acknowledged that the large brace was too big, the medium was too tight for my calf. My suggestion to use scissors to cut the medium brace to accommodate my calf was met with reluctance. Ultimately, he scoured his shelves, but the best option he found offered only slightly improved fit and support.

His supervisor suggested I look on Amazon, so that’s precisely what I plan to do. I intend to take full advantage of Amazon’s generous return policy in my quest to find a knee brace that better meets my needs. It’s a journey that highlights the need for greater innovation and inclusivity in the design of medical support devices, especially for those with rare conditions and female proportions.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


Richard Williams avatar

Richard Williams

I would think Orthopedic supply that makes custom Orthopedic devices would be of help.

Blessings, Rick

Jennifer Lynne avatar

Jennifer Lynne

Thank you, Rick - I am trying to avoid the expense of a custom brace, but that may be what is needed. I greatly appreciate your feedback!


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