Archives for Our stories

Adriana’s Journey With Diffuse Scleroderma

I’ve been living with my scleroderma for thirty three years now. In 1986, I was 29 years old and living in Britain, when my scleroderma struck. Despite the dreadful prognosis then, I’ve been living with my scleroderma for thirty three years now. I was more fortunate than most scleroderma patients in England at that time, because I was given an opportunity to be cared for by an extraordinary lady, called Carol Black. This is my story. The onset of my scleroderma followed the breakdown of my first marriage. In February 1986, having never had a serious illness in my life,
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The healing power of horses

Martine Fremaux – How the healing power of horses helps me live positively and successfully despite having Scleroderma… I felt I would like to tell everyone the things Martine has achieved after her Scleroderma diagnosis including her riding, because her news is inspiring and positive. Setting goals which require confidence, strong motivation and hard work have assisted her to overcome the pains, fears, trials and tribulations of living with Scleroderma. Martine was diagnosed with Scleroderma 5 years ago. At the time of diagnosis, she was not working. She lives on a life-style block with her husband Neil, her son Zane, 4
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Beth Richards – So positive!

Hello to my Scleroderma friends. My name is Beth Richards. I would like to share my Scleroderma journey with you all. From my mid 40s I experienced symptoms, from cracks in my finger tips that bled. Then my fingers were turning white and tingly when it was cold. My fingertips became infected which sometimes led to gangrene, which took months to heal. One finger refused to heal so my surgeon amputated the top knuckle. It doesn’t bother me at all now. I was diagnosed with high BP in 1997 and it is managed with medications. We owned and managed an
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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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