 Hi, my name is Robyn Sims. I have been a member of Scleroderma Victoria, Australia, for many years, and I am President of Scleroderma Australia, which is an ISN Affiliate.
My eldest daughter was finally diagnosed with diffuse systemic scleroderma at the age of twenty-six in 1999. The impact of this diagnosis has made quite a change to her life, but as a mother I felt particularly helpless, confused and in some ways guilty.
After waiting some years (to go through various stages to acceptance) we went together to a seminar organised by Scleroderma Victoria. It was so uplifting to meet others who were living their life well and to hear the encouragement of wonderful speakers. It was at this seminar that I was asked to become a member of the Scleroderma Victoria committee. I felt that this was a great way for me to contribute to the foundation and also to be in a position to learn all the latest information on research.
I was privileged to be asked by the committee of Scleroderma Australia to attend the World Systemic Sclerosis Conference in Florence (which was hosted by Dr. Marco Matucci-Cerinic) in February 2010. It was a wonderful experience meeting so many enthusiastic people all passionate in their quest to better the outcome of scleroderma patients and share information on brochures, fundraising, research and especially in raising awareness in the wider community.
Through the connections made during the FESCA conference I became aware of ISN and with the help of my new friends from the United Kingdom I made enquiries regarding Scleroderma Australia becoming an Affiliate member and to avail ourselves of the gracious offer from ISN to have our own Forum page.
I look forward to online correspondence with people from all over Australia on ISN Sclero Forums: Scleroderma Australia, which was launched on December 9, 2010. Australia is a very big country and I hope this will help people with scleroderma and their families not to feel isolated and alone.
My photo is the emblem Scleroderma Australia uses to raise awareness. We chose the sunflower for a special reason. As the sunflower turns to face the sun, so too do our members look to warmth to ease many of their symptoms. I look forward to this exciting invitation. My email address is robyn-sims@sclero.org. |
