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+Read More2013 World Scleroderma Day
June 29th is World Scleroderma Day.
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Scleroderma Victoria
As with any sufferer of a chronic disease, the opportunity to meet with others in similar circumstances is extremely helpful and for this reason Scleroderma Victoria (previously known as Scleroderma Foundation of Victoria Inc) was established 27 years ago.
Scleroderma Victoria is run by volunteers and aims to support sufferers coping with scleroderma.
The Mission of Scleroderma Victoria is:
- To provide support to those living with scleroderma, their families, carers and friends
- To promote community awareness of scleroderma
- To encourage and support research into scleroderma.
Activities conducted by Scleroderma Victoria include:
- Quarterly newsletters
- Maintenance of support groups located throughout regional Victoria and in metropolitan Melbourne
- Awareness seminars
- Meetings with guest speakers
Our office is manned by volunteers with phone access.
Our History
Scleroderma Victoria exists and continues to grow through the dedication and inspiration of so many throughout the years.
SV began in July 1979 as a self-help group under the guidance of Jenny Gould and Roland Airey who were social workers at The Alfred Hospital working with Dr Alf Barnett.
The group first became known as the Scleroderma Foundation of Victoria Inc. and held its first annual general meeting in 1980 and subsequently was registered as a Public Benevolent Institution in 1984.
Under the newly created Associations Incorporation Act, a new constitution was formulated and the foundation became incorporated on 1 January 1989.
At this time, an office was established at The Alfred Hospital and although the office moved briefly in 1995 to the Arthritis Foundation of Victoria, the Foundation moved to its present home at St Vincent’s Hospital in Fitzroy.
Membership has grown steadily throughout the years from twenty six financial members in 1980 to over three hundred in 2009.
To keep in touch with regional members and their families, the first regional support groups were established in 1980 and since that time support groups have been set up in many areas throughout Victoria and in metropolitan Melbourne. These small group meetings provide opportunities for those with Scleroderma to share time together providing an invaluable link to others experiencing similar situations.
As one of the aims of SV has always been to provide up-to-date information to members, the development of information booklets and a quarterly newsletter have been an important part of its work.
The first newsletter was published in October 1980 and has continued to be produced quarterly from that time. The first information pamphlet, ‘Scleroderma – Problems and Solutions’ was produced in 1981 to be followed over the years by the range of booklets which exist today.
From 1982, Scleroderma Victoria has financially assisted in research into better managing the symptoms of Scleroderma and into attempts to find a cure. With the commencement in 1999 of a patient database by the Rheumatology Department at St Vincent’s Hospital, SV has provided funds to assist in the continuance of this vital study which also now involves patients from the Monash Medical Centre.
In the last 18 months Scleroderma Victoria has funded the position of a Scleroderma Nurse operating a weekly clinic for patients at the St Vincent’s Hospital and the Monash Medical Centre.
Biomarker shows promise in scleroderma
A biomarker that can be used to screen sclerosis patients for pulmonary hypertension has shown promise in a proof of concept study.
Researchers from St Vincent’s in Melbourne found asymmetric dimethylarginine (ADMA) levels had an acceptable high specificity and sensitivity for detecting the complication, particularly when used in conjunction with NT-proBNP.
When combined with the biomarker commonly used in heart failure the test had a sensitivity of 93.3% and a specificity of 100% for detecting PAH, said author Vivek Thakker (pictured) from St Vincent’ in Melbourne who presented his poster during a tour led by Wendy Stevens from the same hospital.
Testing for ADMA was not widely available but cost $60 a test, significantly cheaper than echocardiography, he said.
But the results needed to be validated in larger cohorts, he added.
You can visit Scleroderma Australia on Facebook where we provide a constant source of links, discussions and event notifications. Join our Facebook group and become a part of our community.
The Sunflower
To raise awareness about the condition, Scleroderma Australia has adopted the sunflower as the national icon. The sunflower is symbolic, which, like the sunflower which turns towards the sun for warmth, people with scleroderma are usually more comfortable in warmer weather. Scleroderma Victoria has also adopted the sunflower as our icon.