Southland Group finds thing to be glad about

Southland Group finds thing to be glad about

April 2, 2019

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
Read More

Call for health service to offer nail cutting, after salons fail grade

Call for health service to offer nail cutting, after salons fail grade

April 2, 2019

Radio New Zealand carried the group’s expression of concern at unregulated nail and beauty salons and the lax standards at play A public health report found 88 percent of nail and beauty salons in Wellington were not properly disinfecting and sterilising equipment in 2017. Scleroderma New Zealand president Diane Purdie said scleroderma is a condition that hardens and restricts the skin and internal organs, sometimes resulting in clawed hands. Many patients need to go to a nail salon to have their fingernails cut, because they cannot do it themselves. Given the poor safety record for nail salons, Ms Purdie is
Read More

President’s report March 2019

April 2, 2019

Welcome to the New Year every one, the weather is going well here in Wellington just the right temperature for us. Rob will be greatly missed by us all here in Wellington and on our National committee. Rob had a positive attitude till the very end, always cheerful and he was always coming up with different ways of looking at things. Rob and his wife Chris gave great support to Scleroderma New Zealand as a whole and especially to us here in Wellington and Palmerston North, I believe there was only one meeting that they missed in the three years.
Read More

President’s report December 2018

December 12, 2018

Hello everyone, well where did that year go to? First of all a huge thank you to the Scleroderma NZ committee, they have had their work cut out for them this year, they have been a huge support and I would like very much to show my appreciation, it has been truly valued. A big thank you also to Barbara and John Spavin who have worked hard on these wonderful newsletters, apart from their continued support on the committee, coming up ten years now. Their work has been a big asset to Scleroderma NZ. Also a big thank you to
Read More

NZORD is looking for Poster Stories for Rare Disease Day 2019

NZORD is looking for Poster Stories for Rare Disease Day 2019

November 22, 2018

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
Read More

Seminar – understanding and managing scleroderma

September 29, 2018

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
Read More

Hospital care plan endorsed

Hospital care plan endorsed

September 8, 2018

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.  
Read More

President’s report September 2018

September 8, 2018

Hello everyone, I bet you are all having a sigh of relief now that Spring is in the air, which means lots to do in the garden, be careful of your backs, I know I have just given myself a twinge or two from resting it all winter. We had our AGM on the 29th of June and time has flown by since then. We have our 25 committee members, and two ladies Chris Carlyon, Palmerston North, and Lorraine Horlbrook Invercargill, who have stepped down. I would like to thank both Chris and Lorraine for all their work and support
Read More

Hamilton seminar returns 2018

Hamilton seminar returns 2018

June 1, 2018

Organiser, Linda Bell is working on the line-up of speakers and topics. Both Hamilton’s and Wellington’s seminars continue to attract prominent rheumatology specialists who can impart a professional view of treatments, their worth and availability. Some parts, of necessity, are technical but there’s always a question time when you can have things explained or get some expert, free advice on something about scleroderma and its related conditions. Keep in mind that scleroderma is a complex auto-immune disease and that most members will know more about its symptoms than many GPs. The Hamilton seminar is your chance to find out more
Read More

Does it or does it not?

June 1, 2018

A book review by Rob Tomkies. The New Arthritis Breakthrough, by Henry Scammell. The cover states “The only medical therapy clinically proven to produce long term improvement and remiss ion [in] rheumatoid arthritis, Lupus, Juvenile RA, Fibromyalgia, scleroderma, Spondyloarthropathy and other forms of Arthritis”. The book is a biography of Thomas McPherson Brown M.D.. It explains his frustration at having his research ignored by the majority of medicos. Dr Brown died in 1989, 3 years before this publication. The book has aged but not the message Dr Brown believe through early research that the aforementioned conditions were virus-based. There was
Read More