Disease more prevalent in Southland

Jenny Andrews' hands show the effects of scleroderma. Photo supplied.
Jenny Andrews' hands show the effects of scleroderma. Photo supplied.
Jenny Andrews at her Winton home with pup Taz. Photo by Allison Beckham.
Jenny Andrews at her Winton home with pup Taz. Photo by Allison Beckham.

Health conditions such as asthma and hypothyroidism affect many people in our communities. Eileen Goodwin talks to people about how these conditions affect their lives.

No-one knows why, but Southland seems to have an unusually high incidence of a serious autoimmune disease called scleroderma.

A local rheumatology nurses estimates there are at least 30 sufferers of the disease in Southland, an extremely high number for the size of the population.

Sufferer Jenny Andrews (43), who lives on a farmlet just out of Winton, surmises that the cause may be environmental. She was raised in a rural area near Gore, and wonders if white gravel pits emitting silicon played a part.

''It's huge. There's far too many down here, and the cold is just wicked on us.

''We feel the cold really bad.''

Scleroderma can cause hardening of the skin and internal organs. There are two types, localised, affecting only the skin and sometimes tissues beneath, and systemic, affecting other parts of the body.

It can seriously damage internal organs. Mrs Andrews believes her condition is improved by living in a house built to trap the warmth.

Not many people know about the disease, she says, which seems to start after a stressful event. Everyone in the support group in Southland has a story to tell about a traumatic event that seemed to trigger it.

When she was diagnosed, Mrs Andrews was 38, and it had been about 10 months since the removal of a brain tumour. Thinking she had developed arthritis, she went to the doctor, and was shocked to be told she had scleroderma.

''When I was diagnosed the doctor did say to me `it won't kill you for 10 or 20 years'.''

It was hard telling friends, as there had been ''so much about the tumour'' that she wanted to move on from her health. However, they were supportive, as was husband Jeff.

''It took a while to reconcile myself to it. Jeff and I spent a lot of time in the middle of the night talking about what we wanted to do.''

She has not had the serious complications the disease can bring, but points out she was diagnosed earlier than many of the others.

''I'm not too bad. If I have a change in temperature my hands look like I'm dead.''

Heat makes her feel better, and her energy levels were ''amazing'' during a month the family spent in Europe in the middle of last year.

''I actually wore the rest of my family out.''

Fatigue is a big part of the illness, and she takes an array of natural health products, such as spirulina, and oils, to keep her joints moving.

''I'm absolutely shot when I don't take them.

''I want to stay alive long enough for them to find a cure for it.''

She is able to work part-time, which is hard when her energy is low, but helps her stay positive. Her new house was built not only for the sun, but also to be wheelchair accessible, should that be her outlook.

Another Southland sufferer, Lorraine Wenlock (38), needed open heart surgery last year because the disease caused thickening of the casing around her heart, squashing the organ. The disease commonly causes ulcers, and Ms Wenlock has lost small areas from the ends of her fingers.

She lives in Gore, but grew up in Balclutha. Southland rheumatology nurse Maureen Kirby said she would like to conduct research on the incidence of the disease in Southland.

The number of sufferers was a ''weird phenomenon''. There were many theories and ideas, but no-one knew why there were so many cases, Mrs Kirby said.


Scleroderma

• Name literally means hard skin.

• Rare, chronic, often progressive disease.

• Affects connective tissues. Sufferers have too much of the protein collagen.

• Excess collagen causes hardening and tightening.

• Symptoms include Raynaud's phenomenon, which turns fingers or toes white, blue, and red. Stiffness and pain in muscles and joints.

• Can cause serious internal organ problems.

• Disease more common in women.


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