There was an annoyingly inaccurate article concerning CJD in national newspapers last week.
CJD is a degenerative neurological disorder which occurs at a frequency of about one in a million per year. In Australia, 90% are sporadic and 10% of cases are genetic. There has never been a case of variant CJD (contracted by eating contaminated meat) in Australia.
As it’s so rare, often doctors have never seen a case before. It can be quite traumatic for patients and families to go through the process of diagnosis.
Articles such as that which appeared last week contribute to the stigma experienced by families. Linked is a well informed article by Mandy Newton, whose father and sister died of CJD and who herself caries the gene and will go on to die of CJD.
As a hardworking palliative care specialist I have cared for around 10 patients with CJD (which is a lot apparently!) My colleagues and I are presenting a talk at the PCA conference in September about 14 patients and their presenting features and course.
Have you had experience with patients dying from CJD and their families?