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 :

» Unite Against Scleroderma Event Scheduled For May 5th, 2013

is a rare, autoimmune, connective tissue disease characterized by the overproduction of collagen, which results in the thickening and hardening of the underlying connective tissues which support the skin, blood vessels, muscles, and internal organs...

» Do You Need To Alter Your Diet?

According to Chrissy Carroll, a registered dietitian and certified personal trainer with the , Scleroderma can present differently in each affected person, and diet recommendations are typically targeted toward specific symptoms. She indicated that...

» What Is Scleroderma?

DefinitionDerived from the Greek words “sklerosis,” meaning hardness, and “derma,” meaning skin, Scleroderma literally means hard skin. Although it is often referred to as if it were a single disease, Scleroderma is really a symptom of a...

» The Heart In Scleroderma

Just as can affect multiple organ systems, the cardiac manifestations of the disease are diverse. Although only relatively recently recognized, the heart is a major organ involved in Scleroderma and the presence of cardiac involvement generally...

» Actelion Announces FDA Approval of Brand Name, Veletri, for Pulmonary Arterial Hypertension

US, Inc., today announced that the U.S. Food and Drug Administration (FDA) has approved the brand name VELETRI® for the company's epoprostenol for injection therapy. VELETRI has been commercially available since April 2010 as Epoprostenol for...

» Getting to the Root of Raynaud’s

Dr. Fredrick Wigley is a professor of medicine at Johns Hopkins School of Medicine and director of the Johns Hopkins Scleroderma  Center. A rheumatologist, he has been studying Raynaud’s since 1978. The New York Times recently interviewed Dr....