President’s Report February 2017

It has been a very unsettled summer so far and I am keeping my fingers crossed for some more heat for February. We have had a small taste of it here in Wellington this week. It has been a busy time for Gordon and me on a personal note with four flower shows since September with our last one on the 4th & 5th of February, which was a begonia, fuchsia and dahlia show, a lot of work and support from all the good folk in Wellington and Lower Hutt and beyond. Barbara Spavin did very well in her flower
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Holiday Happiness

Have scleroderma – will travel – Barbara’s Asian and European adventure Armed with trepidation and a 3-litre click-clack of medication I went through customs. “Put your things on the conveyor belt, shoes off, belt off, jacket off, wait, get scanned, then proceed.” Then, plonk your butt onto a seat and put them all back on. Through the first check point – there were to be many more. I took a lot of medication for the 5-week trip. I took an extra week’s worth because you just never know. Travelling on Air New Zealand I thought the seats were very hard. I
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A Carer in Court

For decades full-time carers, paid by the Ministry of Health, but not recognised as employees, have scraped by on the equivalent of $3 an hour. Support group member and former full-time carer, Jan Lowe, called enough. Carer relief is a part of the health system that gives the full-time carer of an incapacitated person a break. Often the person cared for will have Alzheimers or other serious disabilities. After an assessment, the full time carer is given so many hours a year and has to choose a relief carer of their choice. This may be for a few hours at
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If you have a moment darling?

If the way to a man’s heart is through his stomach, can you reach scleroderma the same way? Support group, member, Rob Tomkies thinks you can. First, he had to convince his wife. “I have been researching food relationship with scleroderma. I think a change in food regime for 4 weeks will give some relief.” “Ok, good idea to try anything that will help” “The regime is basically a Paleo diet with some additions. I will list them for you: No dairy which includes cheese, yoghurt, milk and the like. No gluten: Bread or anything made with wheat or barley.
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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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