The story behind PSC Australia
Many people newly diagnosed with primary sclerosing cholangitis, more commonly known as PSC, will turn to the internet to search for information regarding their diagnosis, particularly as PSC is a rare disease. While much information can be found on the internet, the web can quite often be a difficult and daunting space to navigate, particularly when attempting to source the most relevant information about a rare disease. Much of the content found on PSC using a 'google' or 'Dr Google' search can be disheartening, frightening, impersonal and possibly out of date.
This site is a portal; a place where information is gathered and distributed. It is for non-commercial purposes only. It aspires to meet the needs of those newly diagnosed with PSC, their family, friends and/or caregivers, by presenting relevant and up-to-date information about PSC and related medical problems, such as inflammatory bowel disease, and provide links to access further information. It also aims to cater for those who have been living with PSC for quite some time by presenting new and updated information. There are links to Australian sites as well as the latest research on PSC. Reputable international organisations with information on PSC have long been established, and links to these are provided. As as newly diagnosed person, a family member or a caregiver, support is crucial, and there are a number of support groups currently online providing much needed support and practical advice, particularly from a personal perspective. As a person living with such a challenging and changing disease, relevant and current information is vital. This site is intended to complement support groups, to be a 'knowledge base' and trustworthy information source, however it is not meant to replace information and advice provided by your own medical team. With the wealth of personal experience available online and accessible, as well as support groups, and up-to-date information, there is no need to feel alone. Facebook support groups
Facebook PSC support group (closed group): Australian PSC Partners Seeking a Cure Facebook PSC support group for young adults with PSC: PSC-Support Young Adults Primary Sclerosing Cholangitis Support Group Find our more about our PSC story here
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Latest happenings An Australian study of the epidemiology and outcomes of primary sclerosing cholangitis has been published. This study looked at 208 patients from two hospitlas over a 20 year period. The Abstract may be found here.
In conjunction with PSC Patients Europe, two 'lay versions' of academic papers are being made available with cooperation from the authors. A lay version of the article 'Risk Factors for Primary Sclerosing Cholangitis' may be found here. A lay version of the article: 'Applicability and prognostic value of histologic scoring systems in primary sclerosing cholangitis' may be found here. Travel insurance is a question often asked about. There are some companies people have had success with. A number of scientific papers have been added to Scientific Articles and more videos have been added to the News & Videos blog. Promising results are being seen in the trials for norUsro. Links are provided in the New & Updates Blog. A short video on the latest trial by the UK and European consort looking at a treatment for PSC using mesenchymal stromal cells. This trial will commence later this year. The first genetic study of Inflammatory Bowel Disease of diverse populations suggest the genetic effect on disease risk are consistent around the world. See more in the news blog. Full text article on the treatment of Ulcerative Colitis has been added to the Scientific Articles Blog. Videos about PSC are being added to the Resource Page under PSC. A short viewpoint article in the Australian Family Physician brings PSC to the fore for all GPs in Australia. The September edition has a focus on rare diseases. The PSC Patient Registry is open. It is quick and easy to complete and the information is confidential. Don't forget to register and include proof of diagnosis. PSC Connect: A UK based site which provides a way to find where others who have PSC live, and who might be near you. Last updated 21.09.2015 |
