Scleroderma Patients: Call For Better Monitoring, Treatment

Call For Better A Monitoring And Treatment Programme For Scleroderma Patients

The New Zealand Scleroderma Group is calling for the introduction of a monitoring and treatment programme for New Zealanders with scleroderma to mark World Scleroderma Day on June 29.

Scleroderma is an autoimmune connective tissue disease that can affect many organs of the body. It is associated with excessive inflammation, fibrosis and vascular disease and causes hardening and restriction of the skin and internal organs such as the lungs and kidneys, sometimes progressing rapidly to death. It affects people of all ages.

It is likely that about 1,000 people in New Zealand have scleroderma with most of these patients being cared for by rheumatologists.

In 1994 the National Advisory Committee on Core Health and Disability Services considered that there should be one rheumatologist per 100,000 people. A 2004 study found that rather than improving, the provision of rheumatologists was worse with one rheumatologist per 251,211 people.

The study suggested inadequate funding and now the New Zealand Scleroderma Group calls on the Government to adequately fund rheumatological and other related services.

In 2007 a study of scleroderma patients at Middlemore Hospital in Auckland was published showing they were poorly monitored.

Although there is no cure for scleroderma, early detection and treatment of failing organs in scleroderma can improve quality and extend people’s lives.

There are monitoring programmes in centres around the world. In Australia 12 centres are involved in the Australian Scleroderma Screening Program. Three centres in New Zealand are members of a Europe based programme.

World Scleroderma Day marks the death of leading Swiss expressionist artist Paul Klee who died on this day in 1940 of scleroderma. He was diagnosed in 1935. Paul’s production slowed noticeably as scleroderma took hold. His artwork began to transform from light and joyful to murky and echoing. en.wikipedia.org/wiki/Paul_Klee

The New Zealand Scleroderma Group is joining with other scleroderma groups around the world to raise awareness and improve health care for this potentially serious condition.

New Zealand Scleroderma Group

www.scleroderma.org.nz

ENDS

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