Today, Thursday 11 January, marks International Paget’s Awareness Day, the intention of which is to shine some light on Paget’s disease, the little-discussed, but second most prevalent bone disorder after osteoporosis.
Discovered in 1877 by the renowned British surgeon Sir James Paget, the condition presents as a localised skeletal ailment impacting bone restructuring (often referred to as ‘remodelling’). Affecting both single and multiple areas within the skeletal system, factors contributing to the disease include genetic predispositions, environmental exposures (such as certain pollutants), and potential infections.
Understanding Paget’s Disease: symptoms and prevalence
Paget’s disease commonly manifests in areas like the pelvis, spine, and skull, leading to various symptoms and potential complications. Individuals might experience bone pain, fractures, enlarged head size, and in severe cases, complications like blindness, deafness, or cardiac failure. Some may not experience any symptoms at all and may be unaware that they have the condition.
‘Paget’s disease of bone’ or PDB – its full medical term – is the second most common metabolic bone disorder worldwide. The disease has a prevalence rate of 1.5% to 8.3% within the population. Generally, PDB develops in individuals during their late 50s and more frequently affects men.
The disease’s exact cause remains unknown, but familial and genetic factors, along with environmental influences, contribute to its occurrence. Greater occurrence has been observed in specific ethnic groups, notably across Europe.
Early detection remains crucial, emphasising the importance of promptly seeking medical attention upon experiencing related symptoms to prevent further risks and complications. A diagnosis of Paget’s disease involves blood tests to measure alkaline phosphate levels and bone X-rays which may detect any anomalies.
Timely diagnosis aids in effective management, although presently, no definitive cure exists. Treatments using bisphosphonates (or alternatively calcitonin), drugs that inhibit the bone remodelling process, and other supportive therapies can alleviate symptoms and improve the quality of life for individuals affected
A patient’s testimonial
Emanuela, a 57-year-old nurse, shares her journey battling Paget’s disease, highlighting the significance of seeking specialised care and adapting to lifestyle changes. Her experience underscores the importance of timely interventions and specialised medical guidance:
“The treatment gave me a better quality of life although I’m more serene than I was! I had to change jobs as I worked in the operating room. Driving for long distances is a little painful but I take rests. I take care not to strain my arm but I try to do everything I want to, just with more care and attention.
“For example, I try not to fall! I have a cat and also a dog, Sky … she is my happiness but sometimes she pulls too much on the leash and I have to hold her with two hands so as not to strain my Pagetic arm … this year I am planning on walking the Camino de Santiago de Compostela in Spain (without Sky though) … 100km on foot!”
Paget’s Awareness Day
Engaging in Paget’s Awareness Day involves using online platforms to disseminate informative content, fostering discussion, and organising virtual events. Amplifying understanding and fostering solidarity through these initiatives supports individuals dealing with this condition.
UK charity, the Paget’s Association, the only one of its kind in this country, has organised question and answer sessions in different parts of the country today at 4pm to raise awareness. Every year, the Paget’s Association invites people to fill up the limited places they have to raise funds in the London Marathon.
To help support the Paget’s Association, look out for various happenings and announcements on their comprehensive webpage.
Given the lack of wide public awareness, Paget’s disease warrants increased attention and support for affected individuals. Community involvement will hopefully contribute to early detection, improved symptom management, and a better understanding to bolster the support network for those facing this condition.