Personal Stories found online:
Stories from Australians living with rare diseases are found here. This will link you to a pdf of these stories on the Rare Voices website.
Some short stories of people living with rare diseases in general are located here at the NORD website.
Stories of children with PSC are available at The Children's PSC Foundation website.
Me First: An autobiographical comedy about dying: Jason's Facebook page where he details his thoughts and feelings as he deals with PSC.
Ben's Story: This is Ben's story of living with PSC from diagnosis of IBD in 2001 aged 17, to his PSC diagnosis in 2005, his transplant in 2011 and life afterwards. Ben is from the UK, married with a lot of 'fur' kids. An interesting read.
Mark Chatterley's Health Blog: This is Mark's blog about living with PSC. It appears to stop in December 2012, but up till then he details his experiences with PSC, leading eventually to his liver transplant and recovery. He is from the UK.
Bill Varner's Transplant Journey: This blog tells the story of Bill's journey from initial diagnosis through to his transplant and recovery. The blog appears to end in 2010, but there are a lot of details of his and his families experiences. He is from Virginia.
Waiting for a Liver Transplant Call: This is a blog written by a wife whose husband has PSC and is waiting for a transplant. She says it helps her get through the difficult times.
TransplantBuddies: While this site covers all transplants it also has some personal stories of people who have had a liver transplant.
Living with a rare disease: Stories of people living with rare diseases from the EURODIS site.
Book of Life: A collection of stories from Australians whose lives have been touched through organ donation.
Personal Stories: Links to stories provided by Australian transplant recipients, donor families, living donors and others. The Gift ebook is available to download.
Books
The Australian experience of living with a rare disease: available for download.
To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder: by Klug, Chris and Jackson, Steve.
We're in this together: Stories and tips from patients with rare diseases.
Page created 22.03.2014
Page updated: 26.11.2015