Rare Diseases Day
February 29th is a rare event that occurs every four years. It is therefore fitting that this date has been chosen to mark Rare Diseases Day. A condition or disease is deemed to be rare when it affects fewer than 1in 2000 people. This equates to 300 million people worldwide living with a rare disease.
There are several conditions known as Atypical Parkinsonism which fall into the rare conditions category- these are Multiple System Atrophy (MSA). Progressive Supranuclear Palsy (PSP) and Cortico Basal Degeneration (CBD). Each of these conditions resemble Parkinson’s but are associated with different pathology and often do not respond to Parkinson’s medications.
When a medical specialist is making a diagnosis, which may be one of these conditions they are always on the lookout for ‘red flags’- these vary between each condition and assist the clinician in reaching the correct diagnosis.
MSA affects approximately 2500 people in Australia and can resemble Parkinson’s but early urinary incontinence and falls due to very low blood pressure can occur.
PSP affects approximately 1500 people in Australia and is often flagged by early falls due to impaired downward gaze.
CBD is the rarest of these three conditions affecting approximately 150 people in Australia and is often flagged by non -recognition of a limb as belonging to the person- ‘alien limb syndrome’.
The Nurse Specialists at PWA look after people with each of these conditions and are very familiar with the particular challenges each diagnosis involves.
As an organization we feel privileged to support the families affected by these conditions. We have brochures available on each which outline the symptoms and offer suggestions for the best possible planning. These were made possible by the generosity of the Main family who were affected by CBD.
Reference for figures: Fight Parkinson’s Victoria