The first ever International Paget’s Awareness Day will take place on January 11 2019, on the 205th birthday of the pathologist it was named after.
The event, organised by Paget’s Association, aims to improve knowledge of the disease, making diagnoses easier to make, as well as offering support for sufferers.
Members are asked to wear blue and green to promote the event, as those are the colours of the Association.
They will also be hosting an hour-long live webinar at 2pm; further details on this will be provided on their website soon.
Ultimately organisers would like to see more people successfully diagnosed and referred to a GP or consultant.
The disease, sometimes known as Paget’s disease of bone, is a condition which affects bone renewal.
It can cause pain, fractures, weakness in bone, and can sometimes lead to bone deformities or disability.
However in many cases there are no symptoms, and the disease is not found until tested for.
While it is fairly common in the UK, it is rarely found in people under 50 years old.
Diana Wilkinson, Specialist Nurse at Paget’s Association, believes that a new guideline for the management of the disease will help GPs and consultants to make a diagnosis more easily.
She said: “I think the number of people that are currently diagnosed with Paget’s disease of bone is just the tip of the iceberg.
“We need to find all the other people that are suffering, in pain, and have yet to achieve a diagnosis.”
The disease was named for surgeon and pathologist Sir James Paget, who is credited as first describing the ailment.
Sir Paget’s great-great-grandson, Sir Henry Paget, is a Patron for the Association.
The Paget’s Association nurse helpline can be contacted at 0161 799 4646 for advice or information.
More information on the disease can be found here.