Living with an invisible disability

Laura. Image: Rory Gillen
6 October 2017

October is Lupus Awareness Month in Australia.

When you meet Laura Campbell, a fourth year law and psychology student at The Australian National University (ANU), she appears the picture of health: youthful, articulate, capable and full of vitality. 

But behind this healthy façade, Laura is managing a chronic illness. She admits that living as a young person with an invisible disability is extremely isolating. 

“The mental real estate required to manage and maintain a chronic illness is incredibly high.

“It’s by far the loneliest experience I’ve known. People in their 20s think they’re invincible.” 

Laura has lupus, an autoimmune disease that occurs when the immune system produces extra antibodies that cause inflammation in various structures in the body. The inflammation can occur in joints or the skin, or in organs including the brain, kidneys, heart, or lungs. Symptoms vary from patient to patient, so the disease can be difficult to diagnose.

Laura considers herself lucky: her disease was diagnosed at its start, with blood tests revealing the clues that led to the correct diagnosis.

Typically, she takes nine medications a day. On a good day, she can take deep breaths, and can walk and talk with ease. Her pain and fatigue levels are moderate, so she can go to classes, go to the gym, and cook dinner.

On a bad day, she is short of breath, every muscle feels bruised, her feet swell, and her fingers swell and lock in a curled position.

Lupus can strike anyone, but most often strikes women between the ages of 15 and 45. The onset of the lupus seems to have environmental and hormonal triggers and a strong genetic link. It may prove fatal if it affects a patient’s kidneys or lungs.

Why the immune system attacks healthy tissue is unknown, and while various treatments address the symptoms of lupus, there is currently no cure.

The Centre for Personalised Immunology (CPI), based at ANU, is identifying changes in genes that lead to lupus.

Researchers are tracking down exactly how these mutations affect the cells and biochemical pathways within each patient.

By learning the specific pathway that causes lupus in each patient, researchers can then target treatment to individuals, using drugs to interrupt the disease process rather than merely treating the symptoms.

The effort involves a masterful coordination of techniques that have only become available in the past few years, using high-tech facilities and expertise at ANU including the National Computation Infrastructure and Australian Phenomics Facility.

The Centre has also developed a network of clinicians and their patients from around the world and established a joint centre at Renji Hospital in Shanghai.

The development of personalised medicine for patients with lupus can serve as a model for addressing other conditions.

With each success, the Centre will share its techniques and processes with specialists across Australia and the world.

To help our researches unlock the mysteries of lupus to ensure people like Laura can carry the hope of a treatment or cure, please donate today.

The Centre is also seeking healthy blood donors to assist their research. Click here to learn more.

Updated:  9 October 2017/Responsible Officer:  General Manager/Page Contact:  Science Web Services