A Call For Better Monitoring and Treatment Of Scleroderma Patients PDF Print E-mail
Sunday, 01 July 2012 22:42
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.

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.

Source: Scoop Health (2012), "Scleroderma Patients: Call For Better Monitoring, Treatment"; Original article can be viewed here

 
More articles :

» Researchers Gain Deeper Insights Into Causes And New Treatment Strategies For Scleroderma

Using mice, lab-grown cells and clues from a related disorder, Johns Hopkins researchers have greatly increased understanding of the causes of , showing that a critical culprit is a defect in the way certain cells communicate with their structural...

» Role of N-terminal Brain Natriuretic Peptide in Scleroderma-associated Pulmonary Arterial Hypertension

Mark H. Williams, Clive E. Handler, Raza Akram, Colette J. Smith, Clare Das, Joanna Smee, Devaki Nair, Christopher P. Denton, Carol M. Black and John G. CoghlanFirst published online: April 27, 2006Source:

» Pain Common in Systemic Sclerosis

Pain is common and can be severe in patients with systemic sclerosis, a cross-sectional analysis found.Among patients enrolled in the multicenter Canadian Scleroderma Research Group Registry, 83% experienced pain, more than one-third of them...

» UT Researchers At Forefront Of Efforts To Stem The Tide Of Autoimmune Diseases

Autoimmune and autoinflammatory diseases are on the rise and researchers and physicians at are at the forefront of efforts to stem the tide. These diseases are often hard to diagnose and often affect individuals differently.Autoimmune and...

» The Scleroderma Foundation Announces June as 'Scleroderma Awareness Month'

Dedicated to serving the needs of those whose lives have been impacted by scleroderma through its three-fold mission of support, education and research, the is proud to announce June as "Scleroderma Awareness Month."  During June Scleroderma...

» What are the Early Symptoms of Scleroderma?

Scleroderma is a term used to describe a group of rare, chronic diseases characterized by unusual tightening and hardening of the connective tissues and skin. There are two major types of : localized, which only affects the skin; and systemic, which...