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Supporting people affected by Charcot-Marie-Tooth disease.

School

The best person to organise any help that you might need at school is the Special Educational Needs Co-ordinator or SENCO – all schools have one.  Make sure you and your parents meet the SENCO at your school when first starting, and keep in touch with him/her during the years you’re at the school.

Exams

There are lots of options to reduce the strain of exams. It is easy to arrange for extra time, additional breaks, modular units, a scribe etc. The one downside is that you end up making a 3 hour exam last the entire day!  And sometimes, actually writing for an extra half an hour is actually not helpful – just longer to wear your poor fingers out.  But that extra time can be used to stop writing, stretch your fingers and give them a break!

Coursework

Physical help must be offered (e.g. titration in chemistry coursework, chopping in food tech). Extended deadlines not necessary if work planned properly.

PE

Don’t quit! You’re not the only one on the field who doesn’t want to be there!

Talk to teachers about other options. You can do your own physio exercises to warm up instead of the usual running three times round the football field at the beginning of a lesson.  Get a pass from cross-country running and rugby but put extra effort into tennis, cricket and hockey – there’s nothing wrong with your arms!

ALSO

Make sure your teachers know they can talk to us – we have hundreds of people across the country who can help explain what is and isn’t possible for people with CMT.

Between lessons – Most schools will let you set off for your next lesson 5mins before the bell rings to avoid getting pushed around in corridors.

 

And if you are ever bullied – YOU MUST TELL AN ADULT as soon as possible.  Bullying can be stopped – don’t let them get to you, and don’t put up with it.

You can find lots of resources and information about bullying at http://www.bullying.co.uk/

This cute video from the NSPCC gives you some hints and tips to avoid it:

http://www.youtube.com/watch?v=9HocoOVVUDY

 

 

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