Redbridge SERC

Myotonic Dystrophy

Description

Myotonic Dystrophy is a condition presenting with muscle weakness and wasting which may be progressive.
The severity of the condition can vary significantly.

In this condition the muscles contract but have difficulty relaxing, as a result the muscles can become weak and waste away.

Symptoms can be apparent in the muscles in;

  • the face, jaw, neck area
  • hands
  • lower leg

Fact sheets

Training / Help

For further help and support please contact

  • Physiotherapy Team
  • Occupational therapy team
  • Newbridge Outreach
  • SERC

Videos

Screenshot for video: Tomcat adapted trikes

Tomcat adapted trikes

Tomcat Trikes in action

Screenshot for video: Stretches for students in a wheelchair before PE

Stretches for students in a wheelchair before PE

A variety of stretches for beginner wheelchair basketball players, but could be usd with students who are in a wheelchair. Always ensure you seek advice for student's physiotherapist if you …

Screenshot for video: Colours Wheelchair Hip Hop Dance Crew

Colours Wheelchair Hip Hop Dance Crew

This is a cool video- show it to all students whether or not they use a wheelchair.

Learning Aids

Please offer me a seat badge

Please offer me a seat badge

Available from:

TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…

Frequently Asked Questions

  • How does Myotonic Dystrophy differ from Muscular Dystrophy?

    With most dystrophies such as Duchenne, the condition tends to affect hip and shoulder muscles.

    In Myotonic Dystrophy these areas are not affected intially and the initial muscles to be affected are face, neck, hands, feet and forearms

  • What causes Myotonic Dystrophy?

    Myotonic Dystrophy is caused by a myotonic dystrophy gene, found on chromosome 19.
    This condition has an unusual feature in that usually the symptoms become more severe with each generation.

    This condition is transmitted to a child by the mother.

Family Resources

Net buddy- holiday information pack

Website: 
http://www.netbuddy.org.uk/info-packs/holidays/
Description

Net buddy is a great website- full of ideas, tips and specific information.

They have prepared a great Holiday factsheet that has a very comprehensive list of holidays for students who have special needs.

Whizz Kids

Website: 
http://www.whizz-kidz.org.uk/
Description

Whizz-Kidz is a charity aiming to provide disabled children and young customised mobility equipment, training, advice and life skills.

This Charity provides equipment to children that is not available on the NHS. They also run Wheelchair training courses/ Mobility centres in Dagenham and Havering.

Myotonic Dystrophy support group

Phone: 
0115 987 0080
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.myotonicdystrophysupportgroup.org/
Description

This is a UK based website offering help and support.