Guild members are being asked to invite any of their rheumatoid or lupus patients to share their stories in a special video to be posted by Dragon Claw.
The short video will be posted on the Dragon Claw website. The site was developed for people rheumatoid and lupus disease, and young people with arthritis and carers worldwide to assist with disease management, reduce isolation and stress and develop tools to improve quality of life.
Dragon Claw is set to be planned in a way that will enable better management of self-care, reduce member isolation and stress and provide a set of tools and services that will make a difference.
Patient advocate and Dragon Claw advisory committee member, Susan Hughes, says when she was diagnosed with rheumatoid arthritis she had little support and help.
“I really understand what rheumatoid sufferers experience and our founder Michael Gill, former Director of Cisco Systems and another sufferer, has great skill, knowledge and vision to take the Dragon across Australia and the world,” says Hughes.
“You can view me on Dragon Claw’s website video – I’m the patient speaking in the home page video. Michael and I will be delighted to spend some time with you and hear your story in a comfortable environment.
“Please feel free to contact me to discuss how we could work with you, in a way that you are comfortable to tell your story. We expect the session would not take longer than an hour of your time.”
The site aims to also address the needs of carers and patients so that they receive the medical and allied health support they need; however it does not provide clinical or diagnostic information. It has also formed strong partnerships with other groups, including the Guild.
Anyone wishing to talk to organisation about participating in a video should contact Hughes on 0421 459 747 or firstname.lastname@example.org .
For logistical reasons video interviews will be limited to Sydney, Wollongong, Newcastle and Canberra.