Saturday 5 September 2015

The Importance of Awareness (CMT Awareness Month 2015 - DAY 5)

To me, that one question highlights the very importance of spreading awareness of a rare disease!

Until last year's hugely successful Ice Bucket Challenge I suspect that Motor Neurone Disease was not very well heard of at all!

Now, I'm not saying that we should all start throwing ice cold water over ourselves again, unless you wanted to! Instead, I want to use today's blog post to discuss with you why raising awareness of CMT is so important.
Awareness leads to more timely diagnosis

Many patients with rare diseases such as CMT, wait a long time until their condition is diagnosed, if indeed they ever do get a successful diagnosis!  This is partly because many clinicians do not recognise the condition and do not interpret the symptoms correctly. 

Even today, it is perfectly possible (and CMT UK's resident Doc, Professor Mary Reilly, thinks it is in fact probable) that many patients are still living without a diagnosis. 

Awareness leads to better management of the symptoms

Currently, once diagnosed, the real battle then starts! Whilst things are slowly improving, clinicians that CMT patients come across whilst managing their condition can be equally as untrained on how to deal with the symptoms that CMT throws at us.

From inadequate leg bracing or physiotherapy to badly planned surgeries, the consequences to the patient can be numerous.

Awareness of the symptoms and presentation of CMT will allow medical professionals to offer more appropriate and helpful solutions to their patients.
Awareness helps people without CMT to help people WITH CMT

Employers, friends, relatives, and the general public are more likely to understand that whilst for many, CMT is not visible (see the info-graphic in the Day 3 blog post!), there are a lot of underlying issues that the person with CMT deals with everyday. 

We've all had our awkward moment of not offering sufficient help, or offering too much, to a disabled person!

Awareness helps people without CMT too!

Hopefully we will find ourselves at a point in the future when CMT is as well known as Multiple Sclerosis, or Gallstones!  And when we do, things will get easier for you non-CMT folks too!

Employers will better understand their CMT staff's needs, making managing the staff member smoother.  Friends and family will feel more confident in how to approach their CMT relative/buddy.

So please, share!  Share this blog post, share links to, and tell your friends and family about the rare disease with the strange name that you just heard about!

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If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.



  1. Sam, I came across your post because my cousin posted a link. Honestly the title caught my attention more than anything else "The Crippled Crafter" for apparently like you I have CMT. I too am posting blogs on my life with CMT on my blog "A Christian Bookworm". I use to craft a lot but now it is too hard but that is okay for me for I have found pleasure in reading. Glad that I found the site.

  2. I am in a wheelchair currently due to severe rheumatoid arthritis which had caused major damage in my back, knees and feet. I say currently because I am striving for wls them double knee replacement but as that is quite a long term goal I depend on the chair to get around right now. I plan to research CMT as soon as possible. (I'm out right now.) I have a condition that is much more well known and I get SO frustrated when people mix it up with osteoarthritis. I can't imagine how frustrating it would be to get a blank stare when explain my diagnosis. Love the blog name BTW.


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