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People with MJD worldwide and in Australia (7 mins)
People with MJD worldwide and in Australia (7 mins)
A disease that affects people of different races and ethnicities
A disease that affects people of different races and ethnicities
Did you know that MJD is the most common type of Spinocerebellar Ataxia in the world?
It is still a rare disease, occurring 0.63 in 100,000 (0.00063%) people worldwide. In Arnhem Land (NT), there are more people living with MJD than in the rest of the world. For example, on Elcho Island, approximately 30% of the community is at risk of having MJD.
📝 Activity
📝 Activity
Look at the map below and select the 'i' icons to learn more about where MJD is found around the world.
(MacMillan, 2011, prediction figures based on a validated Huntington's Disease model)
MJD in Australia
MJD in Australia
The MJD Foundation has done some genetic detective work with universities in Sydney and Portugal. Scientists compared the DNA of people affected by MJD in different locations across the world. The gene for MJD was discovered by Japanese scientists in 1995 and was also found in Australia in the same year. Researchers have identified that there are many different types of MJD across the world, however, the mutation of the gene among Aboriginal Australians in Yirrikala and Groote Eylandt is most similar to the one found in families living with MJD in Asia. This suggests that it was introduced to Australia from Asia at least 8,000 years ago.
In Australia, MJD is located in clusters.
There are families right across the Northern Territory (NT) and in North Queensland (QLD) with the disease.
These communities are usually very remote, and most are far away from major centres where medical and health professional services are available. Carer support workers are also not often available in these communities, which puts a lot of pressure on family members.
This makes it difficult to organise and deliver services to keep people living with MJD at home for longer.
Typically, people eventually need to move to bigger cities to get the 24-hour care they need, and often end up living away from their family and community.
MJD is often described as one of the worst diseases in some of the most inaccessible places in the world
Symptomatic, monitored and at risk of MJD in Australia
Symptomatic, monitored and at risk of MJD in Australia
Monitored^ are those people who have reported symptoms and are being monitored by MJDF.
At Risk* are those people alive today who have a parent/grandparent with MJD. Children with a parent with MJD have at least a 50% chance of also having the disease.
Each year, the MJD Foundation counts both the people who have MJD and those who are at risk of having the disease.
The last count in July 2022 found that:
792 people were at risk of having MJD,
50 were symptomatic,
69 were being monitored, and
there were 40 National Disability Insurance Scheme (NDIS)** participants with MJD.
This count includes people across the NT and North QLD.
** The NDIS is a program for people under 65 who have a permanent and significant disability. It provides them with money to pay for services, equipment and supports, so that they can have a better life. It also supports their families and other people who care for them. Some of this funding pays for careworker wages.
Watch What is the NDIS? if you'd like to know more.
Want to know more?
Want to know more?
Select the 'FAQ' button to access MJDF's Frequently Asked Questions document, which includes additional information about: the disease, caring for someone with MJD, where it occurs and about the MJD Foundation itself. It also shows you where you can find more information.
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