The Society publishes a quarterly newsletter that includes events involving members, reports of invited speakers and items of general interest.
Welcome to the Winter edition of our Scleroderma Newsletter. We hope everyone is well, and keeping warm on these cold winter days. Dianne gives us good advice and keeps us up to date with what’s going on around New Zealand. Adrienne talks to us about Spin-SSLED. We hear from Erena Bruce with her acrostic poem. Jane Sainsbury shares her journey with us.
Welcome to the Autumn edition of our Scleroderma Newsletter. We hope everyone is keeping well and safe in their Bubble. Well this year has flown by pretty quickly, we are now into April , but for me, it seems like time stood still. The whole time we have been in Level 4 Lockdown because of the Covid-19 virus, I’ve been resting, as I picked up the flu virus early and haven’t felt well enough to do much at home.
Well this year has flown by so quickly, we are almost at Christmas, and New Year is just around the corner. We wish everyone a wonderful Christmas, a Happy New Year for 2020, a safe and healthy holiday season. We have some stories from our members and a wealth of information from the Christchurch seminar to share..
We have a lot of stories from our members and a wealth of information to share in this issue. We hear first from Dianne with her presidents report. We have a Memorial to Terry Horne, Allison O’Sullivan and Lorraine Holbrook. We also have lots of news and events happening from our members. Heather found information about sunflowers. I reckon we change the words ‘nutrient-rich soil’ to ‘encouragement and support’ and we have what Scleroderma NZ is all about: Sunflowers found to share nutrient-rich soil with others. Read to find out more.
We have a Memorial to Sandy Edmondson in this issue. We hope that everyone is coping with winter. We have a wealth of information to share from the recent Wellington seminar and lots of news and happenings from our members.
In this issue we have the initial programme for the Wellington seminar. Again it’s held at the Hutt Hospital. It has always been a highlight of the Wellington calendar and promises to be as informative and interesting again this year. We have a plea for those who decry vaccination to realise that they endanger many immunocompromised people by their attitude. And .. trumpets please .. Cushla turned 50 and had a blast, scleroderma be damned!
This issue carries exciting news about the establishment of a Medical Advisory Board for Scleroderma New Zealand. Many of our group have Raynaud’s and many may not be aware of it. We have links to a self-test to see whether it might be affecting you. Pernicious anaemia is an auto-immune disease that, just 110 years ago, was terminal. Someone found a cure – the most distasteful breakfast anyone could imagine. Thankfully, support groups members who have it can get a regular injection these days. Waikato’s seminar concluded successfully again and we have a report on how it went. Kim Tocker writes an article about living with scleroderma from her successful online articles.And there’s the usual mix of personal and regional news from groups and members.
Blossom is bursting out but the weather remains stuck in winter. What better than to sit back and read about what members of your support group have been up to as they await warmer climes. The New Zealand Rheumatology Association has endorsed a hospital care plan prepared by Dianne, Gordon and Maureen. Keep a copy of this one – it’s vital information should you spend time in hospital. We have a second survey – Dianne thought it would be a good idea to run a quick health survey for scleroderma patients in New Zealand for 2018. We have further articles on craft as therapy; our home heating survey results; how some of us spent World Scleroderma Day; regional news and information on parking for the disabled.
This issue has a good round-up of support group activities, a mixture of opinion and advice and some great tips for coping with the onset of winter. We have news from those regions that sent it in. Adrienne has advice on what to take should you need to be admitted to hospital. Some nasty people are trying to hack our website and Rob has been researching and reading up on an alternative treatment for scleroderma. Win has a golden celebration and a nutritionist has some sound advice on fat – which sorts are good and which are not. To cap it all, there’s advance findings of the podiatry survey and Hamilton prepares for this year’s seminar.
Sad news of the death of another member, Graham Aamodt. He died in November in Wellington. If your feet were made for walking you will welcome our podiatry survey. There is a background to foot care and why we are conducting the survey this month. Speaking of feet, we have a volunteer who will pound the pavement in a half-marathon as Welling gears up for World Scleroderma day mid-year. And some shoits of your fellow group members in Invercargill to round off.
We have the sad case of Callan Fabian who succumbed to scleroderma in Auckland in November; The Johns Hopkins Scleroderma Centre has published a series of guides on coping with scleroderma. We have a backgrounder and links to the full series of articles. Who says the web is just for pictures of cute kittens? Rob found a site that inspires him – and he hopes it will inspire you too! We have news of the far-flung support groups and a summer sensation in the form of Chris’ ginger and oat crunch recipe…
We carry reports from groups throughout the country – and a new one in Auckland is off to a promising start. Winter’s just gone (but it’s sure to return) and Dianne has the background to Raynaud’s and why you must try to avoid its extremes. Jan Lowe continues her campaign for relief care workers not to be ignored and why an effective $3 an hour pay rate is not acceptable. If you have PH, there is help to keep your records in order, particularly when travelling. And a couple of support group member make the newspapers.
This is our seminar special from the Wellington event this month. We have reports of the specialist speakers covering how to cope with a chronic illness, PAH, digestion and a heart-to-heart from somone who has put up with chronic illness for many years. President Dianne dishes out certificates of appreciation, Yvonne has been off in the wilds again and from Southland, a report of their latest meeting…
Newsletter #31 February 2017 »» (view online)
President Dianne reports on group activity over summer and the seminar set-up for May. We have preparations for World Scleroderma Day in June and Barbara’s experience travelling to Europe accompanied by her husband and scleroderma. Member, Jan Lowe explains her progress through the highest New Zealand courts to extract a fair wage for full-time carers. And Rob Tomkies has an interesting take on diet as he copes with scleroderma..
Newsletter #30 November 2016 »» (view online)
Welcome to Summer! President Dianne has a round-up of our new booklet and its availability, many of you will come into contact with coeliac disease and member Pam Dempsey explains it all, we list current Australian clinical trials, if you’re travelling, a cautionary tale on insurance and details of the Waikato seminar.
Newsletter #29 August 2016 »» (view online)
Welcome to the Spring 2016 issue. We have sad news of one of our founder member’s, Val’s, death. Dianne brings us up-to-date on activities, Robyn Tuohy explains pain and stress associated with scleroderma, Waikato reports on activities and there’s a feature on managing Raynaud’s.
Newsletter #28 June 2016 »» (view online)
In this issue, we cover President Dianne Purdies’ annual report. There’s advice from Consultant Dietician, Sarah Crawford, on diet for those with scleroderma and there is some PHA advice from UK websites and societies.
Newsletter #27 March 2016 »» (view online)
In this issue, we cover President Dianne Purdies’ progress on fundraising option for the group and advice for impending cold months. Rob Tomkies relates his experience and that of his dog (yes) with turmeric. Adrienne writes up her Europe trip with advice for those members who are hesitant to head overseas on long-haul flights.
Newsletter #26 December 2015 »» (view online)
Maree Murphy talks about natural remedies; Summer’s here – treat bright sunshine with caution; Just a few calendars left to sell as a fundraiser and the Mayo Clinic lists the good things that happen when support groups like ours start up.
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Newsletter #25 October 2015 »» (view online)
Taking care of arms, wrists and fingers – Amanda Johnson shows us how; Communications help is on the way for the group; A medical herbalist will be our November guest; A fundraising calendar will benefit the group; Waikato’s seminar success.
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Newsletter #24 May 2015 »» (view online)
Report on 2015 Scleroderma Seminar; Incorporation of Scleroderma New Zealand, Our President’s report and we prepare for World Scleroderma Day
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Newsletter #23 February 2015 »» (view online)
Sadness at Kokila’s death; Preparations for the seminar in May; Hamilton keeps us up-to-date; and flower power will brighten the seminar.
Newsletter #22 November 2014 »» (view online)
In this issue: Our spring clean meeting; Southland get-together; All the facts about feet; A link to US Scleroderma organisation’s YouTube Library of help videos.
Newsletter #21 August 2014
In this issue: We’re 5! World Scleroderma day is celebrated; Backgrounder on Raynaud’s; US funds allocated for research on scleroderma; and some discussion on Sjögren’s Syndrome?
August 2014 as PDF
Newsletter #20 May 2014
In this issue: Winter’s back! A podiatry session at our may meeting with lots of advice; Palmerston North members get the travel bug; Yvonne goes tramping
May newsletter as PDF (1,000KB)
Newsletter #19 February 2014
In this issue: An outline of Zoe’s talk on managing pain and fatigue; Best wishes from the Palmy crew (and a wee adventure on the way to visit them) Adrienne’s summary of her visit to the US Scleroderma Foundation’s Patient Information Convention; and some stats from the website to show who’s looking in
February newsletter as PDF (825KB)
Newsletter #18 December 2013
In this issue: A report from Arthritis NZ’s annual conference, deal with chronic illness, Southland group firing well, a mobility shop that may be useful
December newsletter as PDF (825KB)
Newsletter #17 September 2013
In this issue: An autoimmune support group starts up; we celebrate World Scleroderma day; and we shift to new meeting rooms in November
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Newsletter #16 May 2013
In this issue: A full report of the scleroderma seminar held most successfully in Lower Hutt on May 4.
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Newsletter #15 February 2013
In this issue: Managing pain – an expert’s advice; Catherine’s paintings reflect her struggle; full programme for May’s seminar; a Palmerston North support group begins
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Newsletter #14 November 2012
In this issue: A report on the recent seminar staged in Hamilton; we have two outside websites carrying our information; our web site stats show international visitors
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Newsletter #13 August 2012
In this issue: We call for better monitoring and treatment programme for scleroderma patients; we have a website hosting sponsor; our Facebook page is up and running; Hamilton establishes a support group.
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Newsletter #12 May 2012
In this issue: World Scleroderma Day is held; Conserving your energy – some helpful tips; Winter is here – staying warm; and the significance of the sunflower
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Newsletter #11 February 2012
In this issue: A physical and mental approach to fighting illness; an occupational therapist who has a firm belief in mind over matter; tips to survive flying cattle class; and how a Queenslander challenged the effects of his illness.
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Newsletter #10 December 2011
In this issue: Our Christmas meeting goes off well; Hutt Valley DHB combines rheumatology and cardiac wards; Alastair and Tina’s new baby, Ian, has his first outing; Val knocks one off her bucket list; news from the group.
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Newsletter #9 September 2011
In this issue: second anniversary of the group’s formation; new meeting rooms economical and probably permanent; thoughts on a formalised structure; news from the group.
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Newsletter #8 June 2011
In this issue: Arthritis New Zealand changes the way it services members; coping with a chronic disease; scleroderma and your diet; world scleroderma day; news from the group.
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Newsletter #7 February 2011
In this issue: The first scleroderma pamphlet nears completion; some hand exercises to keep fingers supple; membership rises and spreads and time for this year’s flu jabs.
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Newsletter #6 November 2010
In this issue: Arthritis New Zealand talks about up-coming event of relevance to the group; Physiotherapist, Jo Rae, tells us how to exercise our way through pain and discomfort; Barbara reports on her Bangkok adventure and our Southern members get together and say hello.
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Newsletter #5 August 2010
In this issue: The group reaches 1 year of age; Val goes 79 years better and gets to cut the cake; Yvonne Bird tramps the wilds of Otago to prove to herself that she can do it; and there’s some herbal advice to those who like that sort of thing.
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Newsletter #4 May 2010
In this issue: Wellington plan to research and treat auto-immune diseases is started; Dir Richard Steele tells the group of his plans to increase research and of the commercial potential of auto-immune sera; Valerie Smiths writes of coping with scleroderma and the toll it takes; and Tina McLean provides links to thoughtful and authoritative web sites that discuss scleroderma.
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Newsletter #3 march 2010
In this issue: A good response to requests for newsletter contributions; a round-up of advice from Arthritis New Zealand on activities to help cope; Yvonne’s summary of blood tests and what they measure.
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Newsletter #2 November 2009
In this issue: A report of guest speaker, Melissa Porritt who talked about coping with stress Melissa is a clinical psychologist with Gains Psychology and Consulting Services,in Lower Hutt; Dr Andrew Harrison, Gordon and Diane Purdie’s publication in the Medical Journal of their survey of Raynaud’s phenomenon; and a timely pork recipe.
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Newsletter #1 August 2009
In this issue: A welcome to the group’s first newsletter; a summary of our aims over the coming months, such as a web site, (this) newsletter; guest speakers.
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