AFOs help Charcot-Marie-Tooth patient climb Mount Kilimanjaro

Maddie* came to us looking for a pair of orthotics that would not only help improve her symptoms but allow her to keep up her passion for mountain climbing and hiking.

It took some time for Maddie’s condition to be properly diagnosed. She is hypermobile and her frequent falls and lack of balance were attributed to this rather than any other condition.

When she was finally diagnosed with Charcot-Marie-Tooth (CMT), she set about finding orthotics to help manage her condition. CMT affects the nerves in the legs and feet, causing muscle weakness, foot drop and chronic instability in the ankles.

Carbon fibre

Orthoses (AFOs) made from carbon fibre are incredibly strong yet lightweight, making them easier and more comfortable to wear as it helps patients reduce their energy expenditure when walking. The reduced bulk also means it can fit within a wider range of shoes.

Day to day life can be challenging enough, but Maddie is also a keen hiker and mountain climber. She also enjoys caving, abseiling, 100-mile cycling events, wild swimming as well as running events up and down the country. You name it. If it’s outdoors and adventurous, Maddie will be there.

To maintain the level of outdoor activity that she enjoyed, it became clear that off the shelf orthotics would not provide her with the solution to help her continue to reach her goals. Searching for an answer, she found a video of a previous LOC’s patient who had Charcot Marie Tooth.

Maddie says, “I thought to myself, well, they seem to have sorted out his problems, and he has the same condition as me.”

Maddie was assessed by Jack Choong, one of LOC’s senior orthotists, in February. Maddie recalls, “Jack was lovely, but much more than that, he listened to me, he got me, understood my need for adventure and set about finding an orthotic solution that needed to be very strong but also extremely flexible. My immediate goal was to climb Kilimanjaro.”

Even with her current medical-grade ankle brace, Maddie faced serious discomfort. After hours of wear, her brace would start cutting off circulation. Its rigid edges would dig into her skin, leaving her in pain and unable to fully enjoy the activities she loves.

On top of this, her foot drop made it difficult to maintain proper balance and propulsion, forcing her to compensate with awkward hip and knee movements, draining her energy even more.

LOC’s bespoke orthotic solution was to create a completely custom ankle support engineered to fit seamlessly into a carbon fibre external structure. This innovative design did not just stabilise Maddie’s chronically weak ankles.

It also addressed her foot drop, helping her regain proper propulsion in her gait, allowing her to move more smoothly and efficiently. The solution restored her confidence, comfort, and most importantly, her freedom of movement.

Maddie got her wish to climb Mount Kilimanjaro. “It was a 10 day hike, walking 8 to 10 hours a day. There was no way I could have managed the climb without my new brace. I am over the moon. Hat’s off to Jack and the manufacturing team at LOC.”

She continues, “When I first approached LOC, I don’t think I really realised what was meant by a bespoke orthotic, I think I imagined it would be made to measure and therefore fit properly but this is something different, every element of the brace has been tailored to my individual requirements, allowing me for the first time to enjoy my outdoor lifestyle without pain…

I think it’s very important for people not to feel restricted by their medical condition, to know that there is a solution, you just need to know the right people.”

Maddie will be running the London Marathon next year. We will be rooting for her.

*Patient’s name has been changed as she preferred to share her testimony anonymously.

If you want to see how bespoke orthotics can help you, please book an appointment with one of our experienced clinicians today.