I am sharing my story with podiatrists because, in my experience, you are often the first health professionals who truly see what Charcot–Marie–Tooth disease (CMT) is doing to a person’s body – particularly their feet. If my experience helps you recognise CMT earlier, or better support someone once they are diagnosed, then this article has achieved its purpose.
I do not have a medical background. Everything I describe here is based on my own lived experience, and I recognise that symptoms and progression vary widely between individuals, even among people with the same type of CMT.
When my related article was first published in STRIDE in 2019, my CMT was already impacting my mobility. Six years on, the condition has progressed. I now wear ankle–foot orthoses (AFOs) and use a walking stick. This makes it more important than ever to keep my feet in the best possible “working order”. I have also developed hand tremors, which affect fine motor tasks and make self-care more challenging.
CMT is a progressive condition. Foot health is not something that can be addressed once and forgotten. It requires ongoing attention, adaptation, and early intervention. In my experience, podiatrists are central to this process.
Looking back, my earliest symptoms were subtle and easy to dismiss. The first thing I noticed was the persistent sensation of grit between my toes. It was as though I was walking with pebbles in my shoes. I was constantly taking my socks off to empty out grit that simply wasn’t there.
Other signs gradually appeared:
I often notice people walking past me with that distinctive high stepping gait and I think, ‘That person has CMT – I wonder if they know it?’ In many cases, people don’t know, because CMT is frequently misdiagnosed or diagnosed late.
As the disease progressed, my hands were also affected, making it difficult to open jars or turn taps. One friend with CMT leaves her unopened jars in the letterbox, waiting for her friendly postman to open them for her. This is a small but telling example of how this condition affects daily life.
For me, podiatry care is essential. My personal foot care needs include:
One of my biggest challenges has been my big toe. Many people with CMT develop a “floppy” big toe due to muscle imbalance. This creates unexpected problems – from difficulty putting on socks, to an increased risk of tripping, particularly when barefoot.
In my case, repeated trips led to a non-functional big toe and the development of a permanent enlarged “knuckle”. This now rubs on footwear and limits my shoe choices. Advice from my podiatrist to use a toe divider – to keep my big toe aligned beside the second toe – has helped reduce further problems.
These may seem like small interventions, but they make a significant difference to comfort, safety, and independence.
CMT is often misdiagnosed. As previously mentioned, many people miss out on early podiatry intervention. This could have helped with:
By the time many people reach a podiatrist, their condition has already worsened. Earlier referral could reduce complications and help preserve mobility for longer.
We have a CMT support group in Hobart that meets two to three times a year. Many members are supported by podiatrists, and others are encouraged to seek help if they are experiencing problems.
Some of us receive assistance through myGov and My Aged Care, others through the NDIS, but there are still people who fall through the system and receive no support at all.
There is a wealth of information available through CMT Australia. CMT Australia is also supported by a Pathways Nurse, who can help direct people to appropriate services and recommend podiatrists as part of a multidisciplinary care approach.
From my perspective, podiatrists play a vital role in helping people with CMT remain mobile, independent, and safe. Being treated by someone who understands CMT and can recognise its progression – it makes a profound difference.
If this article encourages even one podiatrist to look more closely at a cavus foot, unexplained hammer toes, or a high stepping gait; then sharing my experience has been worthwhile. And to podiatrists who do this – thank you for the difference you make.
For further information on Charcot-Marie-Tooth disease, patient resources, and clinical guidance head to CMT Australia.
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