 | MYOTONIC DYSTROPHY SUPPORT GROUP |
Introduction Myotonic dystrophy is one of the neuro-muscular dystrophies. It is the only
muscular dystrophy to show myotonia, i.e. muscle stiffness. The myotonia,
especially in the hands, is characteristic. Weakness and wasting of the muscles
may also occur. Other parts of the body are frequently involved, and symptoms may include:
cataracts; disturbance of heart rhythm; hormonal problems; learning
difficulties in children; and extreme tiredness. The support group We are a self-help group, willing to provide information and support to
affected families. The group is affiliated to the Muscular Dystrophy Group. As volunteers, we offer help and support to one another by telephone links
and correspondence. Contact families in different areas of the country enable
us to put individuals and families in touch with one another, if they so wish.
Through personal involvement and experience, contact families know much of what
you are experiencing. They will be there when you need to talk, and when you
want to share your concerns. The need for a support group Often diagnosis comes "out of the blue". It takes time to adjust
to the diagnosis, and to understand the condition which affects you and your
family. The myotonic dystrophy support group offers the hand of friendship and ends
the sense of isolation often experienced both before and after diagnosis.
Members of the support group know that it takes time and patience to explain to
others your needs, concerns and difficulties. They will be able to suggest
other agencies to turn to if you need specialised help. Information The support group has information which deals specifically with myotonic
dystrophy. This information is updated to keep abreast of new developments in
research. There is a quarterly newsletter published for and by the support group,
which is sent to all members on our mailing list. Alert cards People with myotonic dystrophy need to have a means of communicating their
special requirements in an emergency. An alert card, available from the support
group, is a purse- or pocket-sized card which explains in simple terms that the
bearer may have problems associated with: - speech difficulties
- anaesthetics (this is vital information if surgery is required)
- extreme tiredness
- muscle stiffness and weakness
The alert card also gives space for details of your own GP, hospital
telephone number, etc. Regional meetings Some areas arrange regular get-togethers, enabling families to meet
together in an informal setting.
Myotonic Dystrophy Support Group
175A Carlton Hill
Nottingham
NG4 1GZ  0115-987 0080
 http://www.comcom.org/mdsg
| 
