World Scleroderma Day 29th June

World Scleroderma Day 29th June (Press Release)

World Scleroderma day gives the chance for the people with Scleroderma and their families to burn the torch, to the world, to help raise awareness. You need to be strong to cope with this condition and we stand together.

What is Scleroderma?

Scleroderma (Systemic Sclerosis) is a rare, chronic disease of the immune system, blood vessels and connective tissue.

It is an autoimmune condition, meaning the immune system becomes overactive and attacks healthy tissue in the body.

The name of the condition comes from the Greek, 'sclero' for hard, and 'derma' for skin. This hardening of the skin can be one of the first noticeable symptoms of the condition, as the body produces too much collagen.

This excess of collagen can affect the skin, joints, tendons and internal organs. It causes scarring and stops the affected parts of the body from functioning normally.

The impact scleroderma has on everyday life varies enormously from person to person. In some cases it can be very mild and easy to live with. For others it can cause serious physical disability and be life-threatening.

It depends a lot on which parts of the body are affected, and how.

With the right treatment, most people live long and productive lives with scleroderma.

Is there a cure for scleroderma?

There is currently no cure for scleroderma, but the condition can be managed well for most patients through a combination of drug therapy, physical therapy, surgery and self-management techniques.

One of the biggest self management techniques is to keep your core warm, by wearing at least 3 layers of warm, preferably woollen clothing along with under leggings especially during the winter months. Keeping you home warm during the winter months, which is very important, but can prove very difficult for some people, due to the cost of heating.

There are approximately 1,000 New Zealanders with this rare condition in New Zealand.

We have excellent Rheumatologists, Immunologists and Specialist Rheumatology nurses in New Zealand who keep a check on Scleroderma patients. There is a lot of research happening overseas where they are looking at ways to help stop the switch which causes, the body to produce the collagen, which stops our body's from functioning normally.

In the mean time, monitoring by way of lung function testing, six minute walk test and heart echocardiogram which is difficult to obtain, due to staffing and equipment levels in some DHBs, is the best we can hope for to help manage our treatment protocol, along with frequent kidney function testing and blood pressure checks from our Specialists and GP's.

There is a good support network here in New Zealand, called Scleroderma New Zealand Inc, which is also kindly supported by Arthritis New Zealand Inc. We work together helping patients around New Zealand with education and support, as it is a lonely business having a frightening diagnosis especially in the first couple of years, not knowing how you are going to progress.

ENDS

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