Archives for News

How to cope with Covid19 Lock-down

Focus on What you can control over difficult times. Many of us might be feeling a general lack of control these days—like we’re out of the driver’s seat and just along for the ride. Usually, the more in control we feel over what’s happening in our lives, the more motivated, happier, and less stressed we are. At a time when we’re all reaching to take back the steering wheel, it’s helpful to shift our focus and actions to what we can control and influence. Internal vs. External control We have a strong sense of internal control when we’re in the
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Memorial – Terry Horne, Allison O’Sullivan and Lorraine Holbrook

Memorial for Terry Horne – 7th of September aged 66 years Nelson. Our Sympathy goes out to Terry’s wife Maggie and family for the great loss of Terry on Saturday the 7th of September 2019. We had great pleasure meeting Terry and Maggie a few years ago and recently at the beginning of this year in Nelson. Terry had a very difficult struggle with Scleroderma for a few years, he showed great courage and determination and kept going with all the loving support from Maggie. Terry was very generous in supporting Scleroderma New Zealand over the years. He was a
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Southland Group finds thing to be glad about

At our January meeting, Jenny, our organiser had us thinking as she asked us to say one thing we are ‘glad’ about. Among the responses were Jenny’s delight that their 16 year-old son had gained his restricted driver’s licence and was out looking for after-school work. Another member had just received word that he had a job promotion, another was they had attended a 90th birthday for their uncle and had a great family catch up. The most practical was Beverly whose husband had made her a sewing table she can use in the warm lounge in the winter for
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NZORD is looking for Poster Stories for Rare Disease Day 2019

In previous years, The New Zealand Organisation for Rare Disorders (NZORD) has selected a Poster Child for Rare Disease Day. In 2019 we want to highlight the wider range of personal experiences by featuring the stories of more than one person with a rare disease. We are calling for everyone, of any age, to share their story. Up to four stories will be selected to feature on the Rare Disease Day website and associated materials. Rare Disease Day takes place around the world on 28 February. We are currently exploring the best options for raising awareness of rare disorders during
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Seminar – understanding and managing scleroderma

Saturday 27th October 2018 Venue: St Johns Methodist Church Hall Address: Corner Wellington and Grey Street Hamilton East –parking available at rear of building RESTRATION FEE $ 15 EACH, PAYABLE ON THE DAY Doors open 8. 15 am BRING COINS FOR RAFFLES. PLEASE EMAIL linda.bell@hotmail.co.nz or Ph. 07 8535434 – 027 548 1214 text details
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Hospital care plan endorsed

The New Zealand Rheumatology Association has endorsed a hospital care plan prepared by Dianne, Gordon and Maureen. The leaflet aims to help nurses and other health professionals manage patients in hospital with scleroderma. It is a check-list of some of the main problems a person with scleroderma may experience and how to manage these problems.  
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Managing foot pain

Living with painful arthritis in your feet? Can’t find comfortable shoes? Learn more about managing foot pain and how to find the right footwear and shoe inserts. The webinar is led by Robyn Tuohy, Arthritis Educator, and Dr Keith Rome, Professor of Podiatry at AUT University.  
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Podiatry survey

We are surveying members to assess the needs of scleroderma patients in New Zealand. Currently there are at least three DHBs in New Zealand that provide a free podiatry service for scleroderma patients. Scleroderma New Zealand wants to encourage all DHBs to provide a free service for all scleroderma patients, as our foot health is most important. At present most of our scleroderma patients have to pay anything from $50 to $90 per private podiatry visit.
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World Scleroderma Day 29th June

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
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