CMT is the most commonly inherited neurological disease but is still a mystery to many. About 23,000 people are said to be affected by CMT in the UK alone.
Symptoms vary, although tell-tale signs do exist, in particular:
- the gradual deterioration of both sensory and motor nerves, which lead to debilitating symptoms within the lower leg, feet, hands and forearms (such as hammertoes and high arches),
- balance problems,
- long term pain and chronic fatigue are also quite common.
The Story of Jacob Trower
The plight of an 11-year-old boy was highlighted on eveningnews24.co.uk. Jacob Trower was diagnosed at 9 years, even tough initial assessments pointed towards muscular dystrophy, rather than CMT.
No-one at the hospital had ever heard of CMT, so providing treatment or therapy proved to be difficult, if not impossible.
In June Jacob underwent an operation on one of his feet to help him walk without having to endure much pain. It took him 8 weeks to recover from this operation and he now looks forward to another operation on the other foot later this year.
At the moment, to prevent him falling over and to minimize his pain, he currently wears leg splints.
Jacob inherited CMT from his grandfather but the disease was even less prominent than it is today at the time, and so went on undetected. This made preparing for the worst out of the question and was a great part in delaying the diagnosis in Jacob, which would have helped him to deal with it much earlier.
Awareness is something Jacob would like to share with family, friends and the general public as it is only this way that hope for a cure will ever be possible.
At the moment promoting awareness is proving to be a burden on local charities, such as CMT UK, the official association active in England, Wales and Scotland. They are doing a great job, and they need your help. It’s not just a matter of money but participation.
1. Join an Association
Each of you could join the local Charcot-Marie-Tooth Association. Power is in the numbers, and we need to influence politicians, regulators, and the press.
2. Share Your Story
Sharing at a local level is sometimes more effective than sharing on a national level. For example, if a member of your family has CMT, it’s quite improbable that this news will make the front page of the New York Times or the opening title on the BBC News.
It’s possible, however, to involve local radio stations, local papers and local bloggers. These ventures are always in need of stories.
Contact them, share your story, and if they publish anything about it, send the results to your national CMT Association and to us at the CMT Journal [hello at cmtjournal.org]. We will share and tweet the story with many others. Many small stories still make worthy national news material.
Besides, who knows? Re-sharing and re-tweeting sometimes create a viral effect and the story can reach the bigger media corporations. That has been the case with Bernadette and her movie on Charcot-Marie-Tooth, it started off as a local event in New York and it’s now spreading worldwide.
That’s also the case of CMT UK, which helped to set up a campaign last September, which included the likes of Professor Mary Reilly, the leading neurological expert in the UK.
Professor Reilly stressed the importance of correctly diagnosing CMT in its early stages, so as to provide the patient with all the right tools, medication, therapy and information to make their lives that little bit easier and to offer them the possibility to start working on their condition from a mental and physical point of view.
A simple message but quite powerful (although nothing is completely “simple” when connected to CMT)! In the last few months, the campaign has reached many unassuming families in the UK, improving their life for good. For more information on this campaign, have a look at the CMT UK website.
And if you need help sharing your story with the local media, feel free to contact us. We will be more than happy to share our experience with the press and social media so that they serve your needs better.
Sharing is Caring
Let’s say it again with the official doodle of the Charcot-Marie-Tooth. Enjoy!
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Image source: Raul Gonzalez on Flickr