September has rolled around again. Which means on Facebook i see a whole month of information and calls to action from one specific organisation – CMT:UK.  

What is CMT

CMT is a genetic condition that damages peripheral nerves. These nerves are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, importantly for balance – where your joints are in space (sensory nerves). When these are damaged, people are said to have a neuropathy.

Because of this nerve damage, people with CMT may find that some of their muscles become slowly weaker over the years, particularly in their feet and hands. Some find that feeling becomes duller, or numb, in the same areas.

In the UK, around 25,000 people are thought to have CMT, making it the most common inherited neurological condition.

Other key points about CMT are that the condition:

  • is hardly ever life-threatening, but often becomes slowly worse over the years
  • comes in many forms, some of which are much more severe than others
  • can affect people very differently, even in the same family
  • can cause the muscles in the foot, lower leg, hand and forearm to become wasted and weak
  • can cause foot drop gait, foot bone abnormalities (e.g. high arches and hammer toes), problems with hand function, balance problems, occasional lower leg and forearm muscle cramping, and loss of some normal reflexes
  • may cause long-term pain and tiredness (fatigue)
  • can be passed on from parent to child: the precise way it is passed on to subsequent generations depends on the genes involved
  • affects all ethnic groups throughout the world
  • is the focus of much research, bringing us close to answering the CMT enigma.

More info found here – http://cmt.org.uk/about-cmt/what-is-cmt/

This is a very personal subject as it is a condition i was diagnosed with about 8 years ago. I have had two quite major surgeries to change the way my feet and legs function giving me mostly pain free walking and better quality of life. This meant spending months in recovery learning how to walk and regaining all the muscle lost from weeks of inaction. I am lucky as i could suffer a lot worse and be wheelchair bound or need serious leg support to even walk.

As a teacher and traveller this has been so important. Before my operations i could never have considered doing even half the things i have done in the last three years.

Awareness is very important as not only the general public but doctors as well need to know more about this. I have shown up to doctors and had to explain exactly what my condition entails and watch while they google it. Not a great confidence building experience.

However, in Australia i have found that more medical professionals know about CMT and know how to treat some of the secondary problems we suffer from. In Cairns i had some badly infected bites which the A&E doctor was very worried about especially after i told him about my CMT and operations. He was the CMT specialist for the hospital which was very lucky for me. Luckily we kept on top it and with some strong antibiotics i had no problems. This shows that knowledge makes all the difference.

So this September i am supporting CMT:UK by sharing and helping people become more widely aware of this condition. Please help by following the links and sharing across your Facebook, Twitter, Pinterest, stumble upon and reblogging this post.

Thank You, Alex

Massive Hobbit door and me
Massive Hobbit door and me
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15 thoughts on “How to show support and awareness in September

  1. I may not have CMT but somehow I understand what it feels to have one as most of the conditions especially weak muscles and pain are experienced by a polio survivor like me, I on the otherhand should not engage in any physical activities as it may cause me being strapped in a wheelchair because of post polio syndrome. People really should have awareness about what other people are going through. I’m glad that you are able to walk and have a better life now and have people who support you while you are going through this. I long for the day when God’s promise will be fulfilled that no one will say, “I am sick,” and pain and suffering is no more. Keep the faith!

    Liked by 1 person

    1. Thanks for sharing your story. It is important to know people’s history to put into context their achievements. Luckily activity is a good thing for me as it encourages muscle strength and will prolong my fitness. It’s something I need to work on and Join a gym. Alex

      Liked by 1 person

      1. For polio at the start of the disease, therapy and physical exercise is required but after that it is something to be avoided, even prolong standing or walking and cold climates, if a polio victim doesn’t know this and push himself/herself too hard and have lots of stress (physically & mentally) it is very likely that he/she will be paralyzed. It is good that it is almost eradicated and awareness on how to manage any disease is really helpful. I’m glad you are getting your strength back even little by little and I hope many would be aware of it.

        Liked by 1 person

      2. Now I’ve learnt something to. It’s a good thing indeed it’s being eradicated. Knowing how to manage your self and sticking to it is very important indeed. The important people are aware.

        Liked by 1 person

    1. Thanks, they are working on lots of research but it’s catching it before its too late. My surgeon used to despair with me as I booked my surgeries around my travels and even went to a festival on crutches. Lol

      Liked by 2 people

  2. Wow, this was a very informative post. I never knew such a disease existed. It is my first time hearing of it actually. Now I know. You are such an amazing person for moving on forward with your life and not letting anything stop you from doing what you wanted.

    Like

    1. Up until I was diagnosed I hadn’t heard of it either. Thanks, it was rough after the diagnosis and the operations but life now is much easier and I’ve had plenty of time to get used to it.

      Like

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