‘The most common unknown disease of the nervous system’
Andrew getting ready for a cycle. Photo by Sébastien Dubois

‘The most common unknown disease of the nervous system’

A LOCAL man will cycle 250 kilometres in August to raise funds and awareness about a common, but largely unknown, disease of the nervous system.

Andrew O’Reilly, who is originally from Kingswood and lived there for the first 30 years of his life but moved up to Blessington last December, will cycle from Dublin to Galway on August 10th and 11th.

A small group will accompany Andrew on the 250-kilometre cycle which will begin in Tallaght.

Andrew is fundraising and raising awareness about Charcot Marie Tooth (CMT), which he suffers from, and is reaching out to get support for his journey.

CMT is the most common inherited condition involving damage to the peripheral nerves and it is largely unknown amongst medical professionals and the public. It is known as ‘the most common unknown disease of the nervous system’ and it is also a progressive disease.

According to Andrew, it is extremely difficult to get information or support specifically for CMT in Ireland.

“I’ve made it my mission to change that and to raise much-needed funds for research into therapies to find a cure for the disease,” said Andrew.

According to the National Health Service (NHS) in the UK, Charcot-Marie-Tooth disease is a group of inherited conditions that damage the peripheral nerves.

The peripheral nerves are found outside the main central nervous system which is the brain and the spinal cord.

These nerves control the muscles and relay sensory information, such as the sense of touch, from the limbs to the brain.

People with CMT may have muscle weakness in their feet, ankles, legs and hands and numbness also in their feet, arms and hands. They may also have an awkward way of walking or gait and highly arched or very flat feet.

The symptoms of CMT usually start to appear between the ages of 5 and 15, although they sometimes do not develop until well into middle age or later.

As CMT is a progressive condition this means the symptoms slowly get worse making everyday tasks increasingly difficult.

CMT affects many aspects of Andrew’s life. “I need to use two hands to even drink the smallest coffee. I also have difficulty in picking anything off the ground, for example coins,” said Andrew.

Andrew has undergone multiple surgeries in his teenage years and early 20s to try and improve his day-to-day living. “The early surgery was to reconstruct my feet as they were becoming more deformed. The later surgery was done to improve the function of my hands, which has worsened rapidly in recent years,” said Andrew.

The cycle from Dublin to Galway is a very significant undertaking in itself. However, due to symptoms of CMT, there will be extra challenges for Andrew. “When I change the gears on my bike, I have to stretch and use my palm to do so as I’ve no power to use my thumb,” said Andrew.

“I hope to inspire kids and adults alike, those with or without CMT. I want to show what can still be done in the face of a neuromuscular disease or any of life’s struggles,” said Andrew.

As part of his efforts, Andrew recently launched his social media page which can be found on Instagram at cmtcycleireland, where further information can be found and donations made.

If you have any questions or can help in any way at all you may also contact Andrew on cmtcycleireland@gmail.com .

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