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NEWS
01 August 08 - World Class Clinic Launches New Digital Awareness Campaign
The Connective Tissue Dysplasia (CTD) Clinic at The Children’s Hospital at Westmead has launched a series of new digital offerings to inform and engage the wider community in their work that affects so many.
They hope it will assist those thousands of Australians suffering from one of 600 rare and complex connective tissue disorders in knowing where they can go to find complete diagnosis and a unique, multidisciplinary approach to their care in order to give them a better quality and length of life.
A new video (www.youtube.com/user/ConnectedFriend), website (www.connectedforkids.org.au), and digital info pack tell the compelling story of this clinic which, for the past 27 years, has exceeded international expectations and boundaries in the medical profession through its research and care when dealing with such genetic disorders which can cause
- Fragile or brittle bones (e.g. Osteogenesis Imperfecta)
- too much joint movement - hypermobility (e.g. Ehlers-Danlos Syndrome)
- limited joint movement, joint contractures, hypomobility (e.g. Arthrogryposis)
- excessive laxity (looseness) of skin or ligaments (e.g. Mucopolysaccharidoses)
- Short stature (e.g. Osteochondrodysplasias)
- Excessively tall stature & scoliosis (e.g. Marfans Syndrome)
Founding Director of the CTD Clinic, Professor David Sillence, said that “community awareness regarding these disorders is important because early diagnosis is key to relieving pain, unnecessary surgery, ineffective treatments and often heartache.”
A 2007 European report found that hundreds of people with such rare and complex disorders suffer from misdiagnosis or unnecessary treatments their whole lives. This was combined with findings of a survey revealing that around 70% of patients with such disorders “felt rejected by healthcare professionals.”
The CTD Clinic is held up at a variety of international conferences on rare and complex disorders as a good example of how to best respond to the needs of these people.
Their achievements are many and Professor Sillence recounts that “Before we instituted our programs almost 3 decades ago, our work with some of the more severe disorders was to be available to relieve the suffering of those children as they died from respiratory failure.
“But today, we don’t expect any of these children will die,” he adds. “We’ve relieved their pain enormously, and for all the different disorders we look after, we’ve made their quality of life just so much better!”01 August 08 - ConnecTeD for Kids Connect with the World via the Web
Did you know that there is a clinic in Australia that helps those children suffering from over 600 known connective tissue disorders?
Now the team at ‘ConnecTeD’ – Friends of the Connective Tissue Dysplasia Clinic – are presenting this fact and much more in the launch of their new website.
“There is so much great work done by the clinic here in Australia that people from as far as the United States have travelled over for its services,” said Clinic Head, Professor David Sillence.
“Our challenges consist of a lack of awareness in the community about these disorders treated here as well as the financial support to maintain the quality of our services,” he added.
President of the ConnecTeD group, Lynne Foxall, said that “many of those in the team are nurses and parents with kids who are affected by one or more of these disorders.”
“Our hope is that through this website and the use of new technologies we can both offer the professional support the clinic provides, as well as gain support from the wider community for these children who so need these services.”
The Connective Tissue Dysplasia (CTD) Clinic currently provides comprehensive care programs for most disorders under its banner.
It brings together health professionals from the fields of Genetics, Rehabilitation, Occupational Therapy, Physiotherapy, Genetic Metabolic Medicine and Endocrinology.
01 July 08 - ConnecTeD invites you to Link Together for Kids in upcoming Ball
With a theme of puzzle pieces and the fruits of combined efforts, the ConnecTeD for Kids team are now selling tickets to their glamorous fundraising ball.
Purchase your tickets to the "Linking Together" Ball make a difference today!