PSC Support Australia
PSC Support Australia became an incorporated organisation in 2018, but it was conceptualised perhaps as long as 20 years ago.
PSC is considered a rare disease by definition, and many people have never heard of it. Most people who are diagnosed do a frantic search for information and come up with an array of science, thoughts and ideas, and yet still feel alone with unanswered questions. They’ve not heard of it this disease, they try to work out what they may have done for it to be so. When my baby daughter was diagnosed there was little on the internet, and little resources for support or learning at all. I turned to journal articles and we were blessed with a wonderful paediatrician and paediatric gastroenterologist and we all learned together.
Now, 20 years on, and encouraged by our international counterparts, PSC Support Australia has formed to support, educate and advocate for people with PSC and their families and friends. We want you to know that someone is always by your side in this walk.
We are comprised of a small volunteer committee and work hard together to find ways to support our Australian community. We are all touched in some personal way by PSC.
If you’ve not found us on Facebook please check out our page and our group. We’d love you to sign up for our quarterly newsletters beginning in 2020, as well as keep an eye out for our monthly blogs, also to begin in 2020.
Our journey is just beginning… it began with a dream, and with each dream becoming actioned we know that our Australian PSC population will be supported while we all work together to find a cure. Will you join us?
Our logo was creatively designed by one of our committee members. The green colour recognising the internationally accepted ribbon colour for liver disease.
The crane is based on the ancient Japanese legend of the folding of 1000 paper cranes to bring a wish from the Gods. There are a few versions of this legend, but they culminate in a story of a young Japanese girl in Hiroshima. The story goes that she contracted Leukemia and her family and friends set to folding 1000 paper cranes for her healing. Some stories tell that she passed away before the cranes were folded, while others say she folded them all in the hope of peace in the world. The messages read by many are for that of hope and healing.
The crane story became personal to my daughter and I as she spent many hours in hospital. Our American friend, also with PSC, told us about this story and did some skype sessions into our hospital ward, and showed us how to fold these cranes and string them to create a decoration to bring hope to other children in the ward. We set about making many strings of cranes for other children to hang on their IV poles. Then, while my daughter was awaiting her transplant, her young friend set about to fold 1000 cranes for Bek. She worked tirelessly on them, and finally finished off soon after Bek’s successful liver transplant. They now hang along our hallway.
So you see, it is the idea of folding together, folding these cranes, for hope and healing that we have based our logo design on. If you ever see us at our functions please be sure to ask if you too can fold a crane and be a part of the hope and healing needed for people with PSC.
Together we can be a patient voice of hope and healing.
PSC Support Australia Facebook Group – https://www.facebook.com/groups/1446656942231840
PSC Support Australia Facebook page – https://www.facebook.com/pscsupportaustralia
PSC Partners Seeking a Cure (our American friends – some great PSC resources here) – https://pscpartners.org/
PSC Support UK (our UK friends – also many great PSC resources) – https://www.pscsupport.org.uk/
Crohn’s and Colitis Australia (Australian group for those with associated IBD) – https://www.crohnsandcolitis.com.au/
Hepatitis Victoria (some general liver advise – not PSC specific but much of it still relevant) – https://www.hepvic.org.au/
Rare Voices Australia (partnering with PSC Support Australia – a unified voice for Australians with a rare disease) – http://www.rarevoices.org.au/
ANZDATA/ANZOD (Statistics on Organ transplant in Australia and New Zealand) – https://www.anzdata.org.au/anzod/