Cure DM have arranged this survey to better understand the community that we support and to help us to make that support more effective. Knowing about the real issues we all face helps charities, healthcare and researchers to develop and provide help for us all.

This survey is anonymous. If information is shared with researchers, it will NOT have anything traceable to you. If research is published, it will be shared on our website ( and, again it will be completely anonymous.

In the survey we are asking for the nearest town to which you live (Nottingham, London, Hull, etc).

If you wish Cure DM to keep in touch with you, please add your contact details at the end of the survey. This information will be held securely by Cure DM and will NOT be passed to researchers or anyone else.

There are 10 questions and it should only take a few minutes to complete. Please fill out a separate questionnaire for each member of your family with Myotonic Dystrophy. We would really appreciate it if you could please pass this survey to anyone else that may be able to help - the more answers we receive, the more useful it will be for everyone!

If a member of your family has sadly passed away, we would invite you to complete the questionnaire on their behalf if you wish.

Thank you for your support, and for helping with this project – it is very much appreciated! If you have any questions, please contact us.

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* 1. Please answer from the perspective of the person with Myotonic Dystrophy. 

Do you consider yourself to have:

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* 2. At what age did you start showing symptoms, and what would you consider your first symptoms to be?

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* 3. Please answer the following 2 questions:

a. How old were you when you received your genetic diagnosis?
(if you haven not been gentically diagnosed please say)

b. Do you know your CTG repeat? If so, please share.

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* 4. How old are you now?
(If you are filling this on behalf of a lost family member or loved one, please indicate 'deceased' and can you tell us at what age they passed away please?) 

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* 5. Were you born:

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* 6. Which Parent did you inherit Myotonic Dystrophy from?

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* 7. Do you receive check-ups/input with any of the following?
Please tick all that apply.

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* 8. Do you, or have you ever, experienced any of the following symptoms?
(not everyone with DM will experience these symptoms) 

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* 9. At the time of completing this survey, are you registered on the MYOTONIC DYSTROPHY UK PATIENT REGISTRY?

If not, please copy the address below, and consider joining this important database.

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* 10. Please enter your NEAREST TOWN below. This is the minimum information we are asking for so we have an idea of where our families are in the country,

If you would like to be added to our mailing list please fill out your address or email. If you would rather not, please leave these blank.

Please note - we will NOT pass on personal information to anyone, it will only be used by CURE DM to send Charity updates.