Cure DM - Myotonic Dystrophy UK Community

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 (www.cmmd.uk) 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.

www.facebook.com/CureDMCIC

support@cmmd.uk

www.cmmd.uk

Question Title

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

Do you consider yourself to have:

Congenital Onset DM1

Childhood Onset DM1

Adult Onset DM1

Late Onset DM1

DM2

Question Title

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

Question Title

* 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.

Question Title

* 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?)

Question Title

* 5. Were you born:

Male

Female

Question Title

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

Mother

Father

Unknown

Question Title

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

Neurologist

Paediatrician

Psychologist

Opthalmologist (eyes)

Speech and Language Therapist

Swallowing specialist

Pain Specialist

Physiotherapist

Occupational Therapist

SENCO / EHCP (in school)

Orthotics (for splints etc)

Gastro/Bowel specialist

Cardiologist (Heart)

Respiratory Physiotherapist (Breathing/Sleep Studies)

Dietician

Other (please specify)

Question Title

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

Cognitive difficulties (memory loss/confusion etc)

Autism / Autistic like symptoms / Learning disability - DIAGNOSED

Autism / Autistic like symptoms / Learning disability - NOT DIAGNOSED

Cataracts

Eyelid weakness

Facial weakness

Speech difficulties

Swallowing difficulties

Myotonia in hands

Myotonia elsewhere in body (calves, tongue etc)

Muscle weakness resulting in fatigue

Muscle weakness resulting in falls

Respiratory weakness - uses BiPAP/CPAP or cough assist

Respiratory weakness - no intervention

Cardiac changes - has pacemaker / defibrillator

Cardiac changes - no intervention

Gastro / Bowel problems

Insulin resistance / Diabetes

Liver function changes

Pain

Uses walking stick

Uses wheelchair

Splints or walking aids

Excessive daytime sleepiness

Other (please specify)

Question Title

* 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.

www.dm-registry.org.uk

Yes

Unsure

Question Title

* 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.

Name

Address

Address 2

Nearest Town (PLEASE COMPLETE)

Postal Code

Country

Email Address

Cure DM - Myotonic Dystrophy UK Community

Question Title

* 1. Please answer from the perspective of the person with Myotonic Dystrophy. Do you consider yourself to have:

Question Title

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

Question Title

* 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.

Question Title

* 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?)

Question Title

* 5. Were you born:

Question Title

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

Question Title

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

Question Title

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

Question Title

* 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.www.dm-registry.org.uk

Question Title

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

Do you consider yourself to have:

* 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.

* 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?)

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

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

* 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.

www.dm-registry.org.uk