Scleroderma Support and Education New Zealand Trust

Scleroderma is a life altering disease. Chances are, when someone is first diagnosed, they would never have heard the word Scleroderma, and their Doctor may have never treated someone with this condition. They will be sent off to many specialists for tests and most likely be put on many medications. It’s a very scary time. They will feel like they are all alone in their battle and that is the reason why the Scleroderma Support and Education New Zealand Trust exists.

Scleroderma is a rare, chronic, auto-immune disease where the body attacks itself and lays down collagen as scar tissue. This can result in extreme thickening and tightening of the skin restricting movement, severe damage to the vascular system resulting in ulcers and amputations of extremities, as well as serious damage to internal organs including the lungs, heart, kidney, oesophagus, and gastrointestinal tract. Organs may become hardened, less effective and in some cases may result in organ failure. Scleroderma can range in severity from mild to life threatening. For most people living with Scleroderma, the disease has a serious impact on daily life, and although medications can sometimes help, there is no cure.

OUR PURPOSE

• To provide a supportive and educational forum for people living with scleroderma, their families and caregivers.

• To increase understanding for those who have been diagnosed with scleroderma or related auto-immune conditions, in order to enable them to better manage and live with the disease.

• To provide education, information and services about scleroderma to any person with the disease or anyone who would like to learn more.

• To facilitate support and services for those people with scleroderma and their families.

• To raise public awareness, knowledge and advance understanding of scleroderma and its symptoms, treatment and impact.

We believe through increasing knowledge we can empower people to make better informed decisions regarding their own health care.

Currently due to scleroderma being such a rare disease it can take a number of years for individuals to be diagnosed. Early diagnosis often has more favourable outcomes therefore raising awareness will assist those still undiagnosed.

We hold regular SUPPORT GROUP MEETINGS every couple of months and some of these meetings include speakers from within the medical profession and community health advocates.

If you would like further information or have been recently diagnosed feel free to CONTACT US at sclerotrust@gmail.com or to make personal contact call Ann on 021 0277 4544. We are also on Facebook at https://www.facebook.com/sclerotrust

Our Trust is funded solely by donations and fundraising activities undertaken by our members. We need funding to assist with the cost of hiring speakers, to produce literature for members, caregivers and the medical profession, and to raise awareness within the wider community to assist with more timely diagnosis.