The first-ever Paget’s Disease Awareness Day takes places tomorrow on Saturday, January 11.
Paget’s Disease is a condition that predominantly (although not exclusively) affects older people and is characterised by pain and deformity of the bones, deafness, fractures, and in rare cases bone cancer.
The UK has the world’s largest number of Paget’s disease sufferers, yet public awareness of the disease is still surprisingly low. Some estimates claim that up to 8 per cent of people aged over 80 in the UK could be suffering from the condition.
The condition is named after James Paget, a Victorian surgeon and pathologist who was the first to recognise and describe the condition, writing a paper on it in 1877. Therefore, January 11, on what would have been his 205th birthday, has been chosen for the new annual awareness day tomorrow.
Bone is living tissue which normally renews and repairs itself without any problems. In Paget’s disease however, this process is abnormal and impacts on the structure of any bone that is affected by Paget’s. People who have Paget’s disease can sometimes have no symptoms at all, however, at the other end of the scale, it can be a very painful and disabling condition.
The new awareness day is hoped to increase knowledge and understanding of the condition, as well as raise much needed funds for treatment and research. Through research, much of which has been funded by the Paget’s Association in the UK, (www.paget.org.uk) there has been some excellent progress, however much more is needed. It has been estimated that as few as 7 per cent of those who have x-ray evidence of Paget’s disease actually come to medical attention. It would be a real achievement to help all those individuals who may be suffering in silence to receive help.
One of the ways it is hoped that existing UK sufferers can be helped is through the introduction of the Paget’s Passport, which is being launched by the Paget’s Association on this day. This is a patient-held record of Paget’s disease. It can be taken to all medical appointments to help improve care and communication by recording key information.
The Association is also promoting a new clinical guideline that has been developed by experts to provide recommendations for the diagnosis and management of Paget’s disease. It provides direction to professionals, to help with decision making and facilitates discussion with patients. The Paget’s Association hopes that the new guideline can be used by every doctor who sees a patient who may have Paget’s disease.
Members of the public who wish to show their support for sufferers of the condition on Paget’s Disease Awareness Day are asked to wear blue and green, the colours of the Paget’s disease logo, on January 11 and share information on social media. In addition, there will be events seeking public support taking place around the country.
For those unfortunate enough to experience Paget’s disease themselves, or who are caring for a relative with the condition, there are an increasing number of mobility solutions which may be able to help make daily life a little easier. At Stiltz Home Lifts, we are committed to making home life easier for all people with impaired mobility, by providing them with a simple and easy way of safely moving between the floors of their home. For more information about our range of domestic lifts, complete the contact us form, call 0330 222 0334 or info@stiltz.co.uk