Words by Smiley Team
Imagine you have a constant stiffness in your body, with joint pain and swelling that frustrates your ability to complete everyday tasks. This is what it’s like to have Paget’s, a disease of the bone that is fairly common in people over the age of 50. To mark its national awareness day, the Paget’s Association has released a new resource pack for healthcare professionals, informing them about the disease.
In the booklet, they explain how to assess, diagnose and manage the disease, with a range of infographics and case studies. It is aimed at spreading knowledge amongst the medical community, about this disease which, although common in the UK, is little understood.
A Paget’s nurse, Diana Wilkinson explained: “Even though the UK has the highest prevalence of Paget’s Disease of Bone in the world, most people will not have heard of it. Indeed, only a relatively small number of cases are satisfactorily diagnosed and referred to a specialist.”
She added: “Often, the first point of contact for patients when diagnosed with Paget’s, is their GP. We regularly hear that when patients visit their practice, their doctor can sometimes have little experience of the condition and so be unsure as to what action to take. We want to contact GP practices, to help educate their staff, and send them a copy of our new information booklet, written for all healthcare professionals.”
The charity has also produced a series of videos, based around the topic of treatment, which is available on their website and YouTube channel. The videos include interviews with leading experts, including their chairman, Professor Stuart Ralston, and honorary president, Professor Graham Russell. Each one focuses on different areas of treatment, including how the discovery of bisphosphonates helps treat Paget’s disease and the significance of other research into its treatment.
The charity’s work tackling the disease’s impact is invaluable to its beneficiaries. One patient, Linda Fenlon said: “Within six months of seeing [the doctor], I was back at work.”
The 11th January marks the anniversary of the birth of Sir James Paget, surgeon to Queen Victoria, and one of the most respected surgeons and pathologists of his time. Sir James Paget’s great, great-grandson, Sir Henry Paget, is a patron to the Paget’s Association.
In an interview for Paget’s Awareness Day, Sir Paget said: “We must relieve the suffering of those who are not currently receiving the help they need.”
Although doctors and researchers have made progress in alleviating the effects of the disease, much more remains to be done.
Wilkinson said: “The Paget’s Association believes that correct diagnosis is the key, as the condition often goes undetected until complications such as fracture, deafness and bone deformity have already occurred.”
To help further the charity’s valuable research into Paget’s disease, visit their donation page. For those exhibiting symptoms call one of their nurses on 0161 799 4646 or email [email protected].
Author - Blyth Brentnall
