|
The Australian
Myasthenic Association in NSW was set up to support sufferers
of Myasthenia Gravis and their carers. It was established in 1983,
and we now have 150 members from all over Australia and the United
States.
The incidence of MG is reported to
be at around 1 person per 10,000. With a population of around 19
million people, we estimate that there are around 1900 sufferers
in Australia. It occurs across races, and across the world. It can
occur at any age, although women usually notice it first in their
20’s to 30’s, and men over 60. It is often quoted that
around twice as many women have the disease as men.
The Australian Myasthenic Association
in NSW Committee is made up of the following positions:
- President
- Vice President
- Treasurer
- Secretary
- Assistant Secretary
- Minute Secretary
All Committee members are volunteers.
Through support networks such as ours,
MG sufferers are provided with the opportunity to communicate with
other sufferers. A common comment made by our members is “I
thought I was the only one that had it before I discovered you!”
The Association meets once every three
months, usually on the first Saturday of each month of March, June,
September and December. The Ryde
Eastwood Leagues Club kindly provides a room for our meetings
[and has generously done so for several years]. The Annual General
Meeting, at which office bearers are elected, is held in March.
The Association survives on membership
fees, donations, help from sponsors
and volunteers. The cost to join is $15, with annual membership
of $15. The Association does not receive any financial support
from the Government.
In addition to our meetings, members
are kept updated via a newsletter every three months.
There are a number of excellent internet
sites that more than adequately deal with the topic of “Myasthenia
Gravis”. On this site, we have deliberately kept the language
easy to read. We use the term “drooping eye lids” rather
than “ptosis”, and “difficulty in swallowing”
over “dysphagia”. We have referred to people with MG
as “myasthenics” – we are not all patients when
we are not visiting a doctor, and “people with MG” gets
a little tedious to read.
Our Links Page
includes medical web sites visited for research, and these sites
may be of interest to those seeking technical details.
All internet sites used for research
for this site are included on our Links Page.
We encourage you to explore these sites, as there is an abundance
of information on our special condition.
|
