The rare disease that claimed Marcia’s life

Kris Ferguson and his wife Marcia Ferguson-Roa always promised each other that if they lived to 80, they’d take their yacht out to sea and pull the plug.

But Ms Ferguson-Roa, 59, didn’t get to enjoy a final sail. She died at St Vincent’s Hospital in December a week after being diagnosed with a rare autoimmune disease called dermatomyositis. It is a variation of myositis (inflammation of the muscles) that affects the skin.

Ms Ferguson-Roa never woke from a coma, and her family quietly brought her greyhound Matilda in via the hospital’s fire escape to say goodbye.

Kris Ferguson and his wife Marcia Ferguson-Roa in Uluru in 2017.

Kris Ferguson and his wife Marcia Ferguson-Roa in Uluru in 2017. Credit:Kris Ferguson

Dermatomyositis (DM) is rare. Only nine in a million people have it.

But the type of DM that killed Ms Ferguson-Roa is more life-threatening and less common. Called MDA5 antibody positive dermatomyositis (DA), it often affects the lungs. Immunologist Dr Matthew Cook and Professor Carola Vinuesa from the Australian National University’s Centre for Personalised Immunology told the Herald only five per cent of people with DM have this variation.

At the same time and in the same hospital that Ms Ferguson-Roa was dying, a Malaysian man Khaidir Abu Jalil with the same rare variation of the disease was recovering. A construction engineer in Australia on a working visa, Mr Abu Jalil became critically ill and had been hospitalised for more than six months with no family or friends to visit him.

A Herald article about Mr Abu Jalil’s plight prompted donations of nearly $180,000 to St Vincent’s Healing, Hope and Humanity Fund to cover the cost of Mr Abu Jalil’s medical care and expensive medication, not on the Pharmaceutical Benefits Scheme. The local Malaysian community also rallied, raising about $40,000 online and bringing food to the hospital.

The two cases have brought attention to unpredictable and insidious variations of myositis. “Generally speaking, it just arrives, and you can’t connect [the symptoms] and there’s no clear picture as to what it is,” said Christine Lowe, the president of Myositis Association Australia, a patient support group. It estimates that about one in 200,000 people have some type of myositis.

Symptoms, such as difficulty getting out of a chair, were often dismissed as ageing, said Ms Lowe, who has a slowly progressing variation.

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