Anthony Brown, a 49 year old father of two from Cambridge who works in biotechnology, was just thirteen when he was diagnosed with Charcot-Marie-Tooth disease (CMT).
CMT is the most commonly inherited neurological condition in the world and there are around 23,000 people in the UK living with the condition. People with CMT may find that some of their muscles become slowly weaker over the years, particularly in their feet and hands.
Anthony’s mum had suspicions from early in his life that something wasn’t typical and soon came to realise that he had inherited CMT, passed down from his grandfather. At school, Anthony recalls that he was significantly less coordinated than his peers and particularly struggled with weakness and injury in his left foot and ankle, resulting in multiple surgeries and tendon transfers to try to balance his feet and joints. The positive impact of these surgeries was slowly diminished over the following years, as the disease progressed.
Despite his condition, Anthony adopted a positive mindset and would always “Get on with what can be done rather than feeling upset about what can’t be done.” This positivity, coupled with an unshakeable resilience, meant he didn’t let his condition hold him back and his passion for sport drove him to play cricket, squash and badminton, sometimes four to five times a week. “I would always get on with things, mainly by setting myself challenges, mentally and physically”, said Anthony.
At the age of thirty one he had his first son, Richard. During this time Anthony noticed that his hands were also becoming significantly affected by CMT and that his foot drop had worsened dramatically. He decided to take matters into his own hands, consulting with a neurologist at Addenbrooke’s Hospital in Cambridge and gaining access to orthotics. Anthony was subsequently fitted with regular AFOs (Ankle Foot Orthosis which supports the ankle in people with drop foot). “This in itself would have been life changing as it was the first time in twenty years that I would have received necessary physical support.” Unfortunately, by this point the biomechanics of Anthony’s left ankle were already so affected by CMT that an AFO couldn’t be made to work comfortably. A physiotherapist at Addenbrooke’s advised Anthony to look into SAFO (Silicone Ankle Foot Orthosis) manufactured at Dorset Orthopaedic.
With a glimmer of hope Anthony contacted Dorset Orthopaedic and in 2009 was fitted with his first pair of SAFOs. “My quality of life improved significantly, and all of a sudden movement became so much easier”, explains Anthony. “One thing that affects me is how I feel about people perceiving my disability. However, the very discrete, hidden nature of the SAFOs, along with how comfortable they are, made a huge difference to how I felt about myself and what I could do.” With new-found freedom, Anthony could now enjoy long walks with his family and would choose to walk to the shops without feeling that he needed to drive.
With new physical confidence, Anthony decided to challenge himself with a new goal. Recognising the importance of physical activity for individuals with CMT, he organised a three-day charity cycle ride from Cambridge to Paris. The event’s goal was to raise funds for Charcot Marie Tooth UK, who support those with CMT, to provide outdoor physical activities and challenges for youngsters with the disease.
Anthony reached out to Matt Hughes at Dorset Orthopaedic to discuss support for the cycle ride. Matt, having examined Anthony’s ankles, made some adjustments to the original SAFO design to customise them to his needs, which Anthony expresses as a transformative change to the support given to his left ankle in particular.
Anthony trained hard to prepare himself for the challenge of a lifetime, as to complete the ride he would need to cycle a punishing one hundred miles a day. Anthony expressed, “Your biggest obstacle is what’s in your mind, not what your body is saying, and it is so important to keep telling your brain that it can be done.” He went onto complete the challenge, explaining the rollercoaster of emotions that comes with such great achievements. Anthony already has his next ambitions in mind, including riding his bike over some big Alpine mountain passes.
Anthony explained how he has come to realise that there is more to life than work, and how important life balance is. In the last twelve months he has cycled an outstanding five thousand miles, having a new appreciation for health and lifestyle. He has also followed up on his love for music, studying theory and performance, and has just achieved his grade eight in singing. He is currently a full-time family man with his two children.
When asked what advice he would give others in similar positions he explained, “I would say to always have something to aim for, and to have the mental strength to not let life’s necessities get in the way of your ambitions.”