Archives for Our stories

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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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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Waikato has staged another successful scleroderma seminar

Attendees came from Kaitaia, Auckland, Rotorua, Matamata, Tokoroa, Whangamata and there was a good turnout from Hamilton. Many had not attended a seminar before and had just been diagnosed. As we had become incorporated I was able to raise funds to cover the seminar costs involved. I thought the day went very well, I had family and friends doing the catering and there was plenty to eat. There were excellent speakers: registrar, podiatrist, occupational therapist optometrist and a respiratory physician. We also watched the DVD Documentary “Beneath the Surface”. With the help of social media outlets Christy Caffrey connects to
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Point Howard to bus barn challenge

Dianne’s big adventure  You might have heard of the Mt Lowry Challenge on the Eastbourne hills on the east side of Wellington harbour. My husband Gordon and I invented our own version: “The Bus Barn Challenge,“ traversing the Eastbourne ridge to the big bus parking shed. We set out on a Sunday a couple of weeks ago. It was a toasty 25 degrees so I took plenty of extra clothes in case I got a little damp with the climb up Lowry.
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Flight Path of Disability

A support group member’s experience with scleroderma Palmerston North support group member, Catherine Thompson, has completed a series of paintings entitled “Flight Path of Disability”, representing her journey with scleroderma and her my life over the past year. It also expresses grief and loss.
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Going travelling

At the August meeting of the support group, member, Adrienne Burleigh described how she faced down being a scleroderma sufferer and became instead a defiant traveller, determined to see get to the other side of the world, have a holiday and return home. Read about her experience and you’ll see that she triumphed.
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We are on Facebook!

Yes, there’s something to do on Facebook now instead of playing Bejewelled, Farmville or looking at cat pictures from school friends you haven’t met in 20 years. Cushla set the page up and at the time of writing it had more than 30 “likes”. Gaining more “likes” unlocks new functions on the site so do take the time to “like” our group and convince your friends and families to do it too.
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