Progressive supranuclear palsy (PSP)
and corticobasal degeneration (CBD)
These are names of two neurodegenerative conditions. Names that don’t roll off the tongue very easily, names you’ve probably not heard before and names which are not particularly memorable.
Well unless, of course, you are one of the 10,000 people in the UK living with one of these two rare brain diseases. Diseases which due to a loss of nerve cells in the brain, over time can affect an individual’s balance, speech, vision, swallowing and movement. Diseases which currently have no treatment and no cures.
Then, if you’ve received that diagnosis, they are names you can’t forget.
The importance of raising awareness of rare diseases
Those reading this, will be all too aware of how hard it can be to raise awareness of a condition that is rare, whether it has a memorable name or not.
Yet raise awareness we must, in order to ensure people living with the conditions can receive an early diagnosis and access to the joined-up care and support they need to live well and plan ahead.
It’s particularly hard, raising awareness, when the two conditions we are referring to, often abbreviated to PSP and CBD, show early on in a similar fashion to other neurological conditions such as Parkinson’s. Or, due to the age of the people the conditions typically affect, being passed off as symptoms of old age.
In fact, recent research has identified, almost 50 per cent of people living with PSP and CBD are initially diagnosed with other conditions before being reassessed as symptoms progress further.
It’s Not Parkinson’s has long been a message we have promoted, focusing on the small differences GPs and other healthcare professionals might spot when investigating people’s concerns.
We’ve even produced an easy to digest animation and targeted resources, to help GPs and healthcare professionals identify the symptoms so they can make the all-important referral to a neurologist. This referral will then lead to testing such as MRI scanning, gait analysis and eye checks, ultimately resulting in a timely diagnosis.
Watch our Red Flag videos via the links below:
Two additional resources we have produced are Red Flag posters. These posters list the symptoms of PSP and CBD, which stand out as being different to Parkinson’s or other neurological conditions. Symptoms such as falling backwards, a fixed gaze and issues swallowing for PSP, and speech problems such as slurring or talking softly, cognitive and behavioural changes and an alien limb for CBD.
The posters also call for GPs in particular, to make a referral to a neurologist if a patient is experiencing one or more of the symptoms listed.
What we want to achieve this PSP and CBD Awareness Week
The resources are received well however due to the rareness of the conditions, there are still a large number of GPs and other healthcare professionals who have not heard of PSP or CBD.
And since, in a patient survey 91 per cent of PSPA supporters said they also had never heard of the conditions before their diagnosis, we know more needs to be done to improve awareness levels.
This PSP and CBD Awareness Week, 24 to 30 May, we will be spending time talking about our 10,000 Voices campaign, launched to highlight the number of people affected by the disease and to help amplify their voice and needs in the medical community and beyond.
We will use the week to create conversations, to launch new resources; appealing to a wider audience and focusing on the symptoms of PSP and CBD separately, to share experiences and to hold community cultivating activities.
The purpose of the week, of the conversations and activities, is clear. To encourage people to stop and think – no, it’s not Parkinson’s. It’s PSP or CBD.
To contact and for more information about PSPA
If you’d like to find out more about PSPA, PSP and CBD and the 10,000 Voice campaign please visit https://pspassociation.org.uk/
To receive support from PSPA, please contact the Helpline on 0300 0110 122 or email@example.com.
The PSPA Helpline is available Monday to Friday, 9am to 5pm and 7pm to 9pm.
Rare Revolution Editor