Help spread the word
TODAY, June 29, we celebrate the life and death of artist Paul Klee and all those who face the hard challenges of living with scleroderma.
We advocate for a world where equal access to treatments, quality care and community participation are available to people with scleroderma.
Our aim is to educate our community and raise awareness so that scleroderma is afforded the consideration and attention of other widely known medical conditions.
Having a medical condition that nobody has heard of is a lonely business.
The purpose of World Scleroderma Day is to create awareness of the everyday impacts of living with scleroderma.
June 29 is a day to recognise people with scleroderma and empower others to support us in our campaign for equity and improved quality of life. What is scleroderma? A medical condition of the immune system, blood vessels and connective tissue, scleroderma can attack many body systems or just a few.
It is very hard to diagnose because each person may have a different combination of symptoms, and it progresses at different rates for everyone.
While some symptoms are visible, like hard puffy skin on the hands, Raynaud’s, and tightened joints in systemic forms, the most serious symptoms are hidden, and the person with scleroderma may look quite well to outsiders.
Inside that person, the lungs, heart, kidneys and gut are only some of the systems that may be affected.
On the other hand, sometimes the face alters significantly although the organs are healthy, and facial changes may be hard to accept.
The causes of the different types of scleroderma are unknown, but we do know what happens – the auto- immune system malfunctions. The body places excess collagen on its connective tissue which makes up the skin, joints, tendons and parts of the internal organs.
Damage to the blood vessels, meanwhile, causes them to constrict and stiffen, and weaken the organs they supply.
There are now very successful treatments that can halt the progress of scleroderma, but each of these applies to specific symptoms.
There is no overall cure, and we are yet to find a cause.
It is extremely important that diagnosis is made as early as possible, so that treatment can begin.
An informed doctor can diagnose scleroderma through a combination of medical history, physical examination, blood tests and non- invasive investigations such as capillaroscopy.
It is thought that scleroderma affects one in every 10,000 people.
We know that women are affected four times as often as men.
It is not contagious or infectious.
Early diagnosis of scleroderma saves lives and leads to control of the medical condition.
To raise awareness about the condition, Scleroderma Victoria has adopted the sunflower as our icon.
The sunflower is symbolic, as, like the sunflower which turns towards the sun for warmth, people with scleroderma are usually more comfortable in warmer weather.
You can support us with donations, by holding your own fundraiser, and talking to others to help us spread the word.
For more information contact secretary@ www. sclerodermaau stralia. com. au, call 0431 105 033, or visit sclerodermaaustralia. com. au. ROBYN SIMS, Scleroderma Australia Honorary Administrator.