Archives for Our stories

Hamilton seminar returns 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
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Does it or does it not?

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
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Hospital survival kit

A lot is said about civil emergencies and survival kits. At Wellington’s May meeting, member, Adrienne, showed us all how to how to draw up a hospital kit. She realised when she was a guest of the nurses and doctors that many things she would like to have had with her weren’t to be found. And so, she drew up her own hospital survival kit; those things that sit on a shelf within easy reach at home, taken for granted, but which aren’t to be found in hospital. Any bag or small suitcase can be loaded with the kit, to
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Paddling the Whanganui

Support group member, Yvonne, doesn’t let scleroderma tie her down. Previously, she has reported from the back of a pushbike in the wilds of Otago. This time, it’s from the river rapids. Eight people, four canoes. One unforgettable journey. We put our canoes into the Whanganui River at Taumarunui, and pulled them out for the final time at Pipiriki, 5 days and 145km later. The Whanganui is a small river where our trip began, passing through farmland and gradually into native bush. That first day was a mixture of fear, exhilaration and laughter, as we learnt to control our canoes
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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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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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