Why the Handbook was written
Myasthenia Gravis (MG) is a chronic auto immune disorder which results in muscle weakness and fatigue.
It is quite rare in our society and little known in the general community outside the small group of people who have been positively diagnosed. No current figures are available to tell exactly how many have MG in WA. Using recent estimated world wide figures of the prevalence of MG being 11-15 per 100,000 it could be assumed that there are approximately 250 sufferers in this state.
Of this number fifty have been in contact with a small support group allowing sufferers and family members to share their experiences and to learn much from each other.
Some of the group were diagnosed many years ago and some have even indicated that until they learned of this support group, felt they were the only person in WA with MG.
A common issue for all sufferers related to initially having no or limited information about Myasthenia Gravis followed by then having too much technical information.
The group, Myasthenia Gravis Friends and Support Group of WA (Inc) set out to review the literature available from within Australia as well as the UK and the USA. They soon became aware that Myasthenia Gravis, although technically the same in the way it manifests itself in the body, nevertheless produced quite different outcomes to individual people.
The group determined to produce this Handbook for Myasthenics - suitable to both newly diagnosed, their families and carers, and those who may have known for some years that they have MG but have had little opportunity to talk to others similarly affected.
Throughout this booklet the abbreviation MG is used for convenience but as will be shown in subsequent chapters, there are varying forms of the disease which was first described by Dr Willis in the U.K. in 1672.
This booklet is not presented as a medical textbook although
the facts within have been subject to careful review by two Neurologists very
familiar with the disease. Rather it is a sharing of common and uncommon experiences
of some people in WA. In their own words they will describe how their symptoms
vary, and some of the difficulties they have faced and overcome.