Coeliac Disease – finding support

Scleroderma NZ member, Pam Dempsey, has coeliacs. here’s how she copes. I was diagnosed with coeliac disease nearly 20 years ago and a few years later with scleroderma and then later became dairy intolerant. Way back then it was difficult to be on a gluten-free diet as there was very little help available and the Internet was not an option for help. These days it is so much easier as Coeliac NZ (Auckland) is an amazing organisation that provides an excellent service to those with coeliac. There is a wonderful website providing coeliacs with so much information in every way.
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President’s Report November 2016

Seasons greetings to you all, it isn’t long now before we are all rushing around to get our last minute jobs done before we head off to get together with family and friends or just have a quiet one at home. We have had a busy time here in Wellington with the printing of the booklets which have now been sent out to those of you who have requested them. It has been a long process and one we couldn’t have managed without help from our hard-working fund-raisers: Linda Bell,Allan and Sandy Edmondson and our Specialist Nurse Maureen Anderson and
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President’s Report August 2016

Bring on Spring, we all need that boost of sunshine, and we have had a good taste of it over the last few days. I hope that you have all mostly come through the winter spell here in New Zealand quiet well. We have been reasonably fortunate throughout New Zealand as it has mostly been mild, with just with one or two heavy snow storms here and there around the country. We had a sad start to July with the loss of Valerie Smith as you will read about later in this newsletter, she will be missed by our group
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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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President’s Report June 2016

It is with pleasure that I sit here in our warm living room, with the fire roaring on this cold June afternoon. Firstly I would like to thank all of you on the Committee for all your hard work over the year. Especially Maureen Kirby, our Southland Specialist Nurse, for raising a lot of money by producing and selling calenders for four charities, one being Scleroderma NZ (we received $900) and Linda Bell, from Scleroderma Waikato, for her great effort of another movie night charity raising $800 for Scleroderma NZ. Also many thanks to all of our members who have
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Tina talks to TV3 about scleroderma and packaging

Wellington member, Tina, featured in a TV3 news programme, Story, about her daily struggles with packaging and the need to make it easier for everyone to get at stuff without hurting their hands in the process. By Ryan Bridge Have you ever struggled to open a can, opening the lid of a jar or getting a pair of scissors out of its packaging? The answer is probably yes so imagine what it must be like if you suffered from arthritis. Story met Tina McLean who suffers from arthritis and takes pride in her long painted nails. But they’re not just
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Golden Paste is a Golden Remedy

We learn something new every time we attend a Scleroderma meeting. A couple of meetings ago a new attendee suggested that I could replace my paracetamol, which I was taking at 3-hourly intervals, with “golden paste”. She said that she even gives it to her horses for arthritis, with excellent effect apart from leaving a yellow “smile” around their faces. She said the recipe could be found on the internet, the main ingredient being turmeric. We bought turmeric from Commonsense Organics on the way home and Chris immediately made a batch. The hope was that it would help me replace
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President’s Report

We have been extremely lucky with summer this year, it has been long and very warm and I’m sure it has given us all some relief in one way or another, but one of our biggest hurdles has been to keep cool, but not to get cold in the process. The society is coming together quite well, our booklets will be printed and posted to all rheumatology services and GPs who are keen to learn some practical and basic knowledge of Scleroderma. We’ll send the hospital check-list to those of you who want it with the help of an NZ
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There and back again – Adrienne’s trip

It’s northern November, it’s getting cold and days are shortening. The news talks of terrorist attacks in Paris. Europe’s railway stations and border crossings are crowded with refugees. Who would want to go to Europe at this time of year. Well I did – and I went. As part of my bucket list I wanted to do the Christmas Markets that are held throughout Europe in November and December. I’d combine it with a cruise along one of the major rivers. The desire culminated in four kiwis and three Americans joining the last Christmas Market cruise on the Danube for
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President’s Report

We have some exciting news for December: Kim Tocker, one of our members in Christchurch joined with Arthritis New Zealand to hold her second meeting in Christchurch. Jan Ipenburg, a specialist Rheumatology Nurse from Christchurch Hospital, gave a talk about scleroderma, in general terms. She included a question and answer session. Well done Kim. This is a big effort and I know that your work is very much appreciated by all who have attended. Patients who belong to support groups and who take the time to attend support group meetings cope and feel better within themselves. I have included some
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