Article courtesy The Examiner: http://www.examiner.com.au/story/224787/lupus-sufferers-urged-to-join-research-program/
LAUNCESTON lupus sufferer Colleen McCormack says she is concerned that young people with the autoimmune disease become isolated from friends.
“It is awful for young people - their friends don't understand when they say, I'm too tired, I can't do anything,” Mrs McCormack said.
“They end up isolated from their friends.”
Yet Mrs McCormack knows that more than 30,000 Australians struggle with the disabling and life-altering impact of lupus.
More people have lupus than AIDS, cerebral palsy, multiple sclerosis and cystic fibrosis combined, according to the Lupus Association of Tasmania.
That's why Mrs McCormack was one of the first to volunteer to join a joint University of Tasmania- Launceston General Hospital research program.
This week she urged other people to volunteer as participants in the latest study in the $48,000 three-year research program to try to find out why lupus sufferers are more likely to develop blood clots than other people in the community.
University of Tasmania haematology lecturer Murray Adams and LGH clinician Al Khalafallah have worked together on the lupus research.
To make the latest study substantive they need 100 people to take part - half lupus sufferers and about half who are not as the control group.
“At the moment we have 70 people involved from across the state - we are looking for another 30,” Dr Adams said.
People with lupus can have a range of clinical problems ranging from skin rashes, renal disorders and infections to blood clots.
Professor Khalafallah said that Tasmania had more lupus patients than other parts of Australia and it was important to develop ways to detect if they were prone to blood clots which could be deadly.
Those interested in becoming involved as a volunteer patients in the lupus research should contact Dr Adams by phoning 6324 5483.
Lupus is an acute and lifelong autoimmune disease that leaves the immune system unbalanced, causing inflammation and tissue damage to almost every body organ system.
Lupus can affect the skin, joints, blood and blood vessels, heart, lungs, kidneys and brain.
It can be difficult to diagnose because its symptoms are similar to other illnesses.
More than half the people with lupus suffer four or more years and visit three or more doctors before obtaining a correct diagnosis.
The health effects of lupus range from mild to life-threatening and swing from periods of increased activity called flares to remission.
Authorised by the Head of Human Life Sciences
21 August, 2012