Fourteen years ago, when in her late 30s, Sale woman Jenny Banwell received some unexpected news that turned her life upside down.
Out of the blue, the mother of two was diagnosed with a clot in her leg and sent for a blood test by her GP, who immediately sensed something else was amiss.
With little information to go on, no family history of blood clots and a previously healthy life, Jenny had little idea what could be wrong.
But the next medical specialist Jenny saw picked it as soon as she walked in the door.
“She looked at me and knew straight away; I never found out what it was about me that she saw, but she knew,” Jenny said.
It wasn’t long before the formal diagnosis of scleroderma was made, sending Jenny’s life into a spin and leaving her with a host of questions and uncertainty.
“I’d never heard of scleroderma,” she said.
“Nobody I knew had ever heard of it, and I had no idea what was in store for me.”
Scleroderma is a chronic connective tissue condition classified as an auto immune rheumatic disease.
It currently affects about 6000 Australians.
A major part of the condition is sclerosis, which is the medical term for the thickening and hardening of tissue.
Scleroderma can cause serious damage to the lungs, heart, kidneys, oesophagus and gastrointestinal tract.
Sclerodactyly and joint contractures from tightening of the skin cause decreased movement.
Raynaud’s phenomenon, where smaller arteries that supply blood to the skin constrict excessively in response to cold, is the most common early sign of scleroderma.
Other symptoms include skin thickening, skin ulcerations, poor circulation, calcinosis, telangiectasia, and dry or itchy skin.
While there is no known cure, there are treatments that can help with the symptoms, and this is why early diagnosis is essential.
The disease is progressive, and although Jenny didn’t feel unwell at the time of her diagnosis, in recent years scleroderma has limited her ability to live independently or work full time.
While she says the illness has irrevocably changed her life, she tries to maintain a positive outlook and puts much of her limited energy into raising awareness of the condition and staying strong for her two children, aged 18 and 22.
“It would be easy to become negative and to just shut down,” she said.
“But a big part of dealing with the disease is staying positive and mentally healthy.”
Jenny’s mission now is to reach out to others with the illness, particularly newly-diagnosed patients who may not know where to turn for support.
“When I was diagnosed it was such a shock,” she said.
“I think I couldn’t take in everything the doctor was telling me, and having the opportunity to speak to other people and have that local support would have been great.
“I’d like others to be able to turn to a local Gippsland support group for friendship, support and sharing of knowledge and information.”
The exact cause of scleroderma is unknown, but its three features are the overproduction of collagen, an autoimmune response, and blood-vessel damage.
Statistically, women are more likely to develop the illness, and it is most frequently diagnosed in people between the ages of 25 to 35.
World Scleroderma Day is tomorrow, June 29, and many iconic buildings around the country will light up in yellow to shine a light on the rare and debilitating condition and raise awareness, including The Wedge and the clocktower in Sale.
Gippsland residents are asked to show their support by visiting the sites and take photos to upload to the Scleroderma Australia Facebook page.
Anyone who wants to join the Gippsland scleroderma support group can email Jenny Banwell at firstname.lastname@example.org