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Paget's Disease of Bone awareness event - 08 January 2019

Paget's Disease of Bone awareness event
08 January 2019

 

On the 205th anniversary of the birth of Sir James Paget on Friday, 11 January, our hospital and The Paget’s Association are hosting an event to raise awareness of Paget’s Disease of Bone.

The first ever International Paget’s Disease Awareness Day with take place on Friday as, 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.

The condition affects the bone’s normal metabolism, which can result in severe pain, fractures and disability.

Keith Simpson is one of many who has personal experience of the affects that Paget’s disease can have. Paget’s disease caused a traumatic fracture of his leg and whilst this was successfully repaired, he later spent many years in pain, searching for a surgeon who would replace his hip.

Through the Paget’s Association, Keith was able to find the help he needed and following successful surgery he decided to help others by becoming a Trustee. Keith said; “Until I found relief, Paget’s caused me tremendous pain and suffering.  It’s imperative that we help those who haven’t yet found the answers and treatment that they so desperately need.” 

The 11th of 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. His name was given to Paget’s disease and the Association is proud to have Sir James Paget’s great great grandson, Sir Henry Paget, as a Patron.

Although there has been progress in alleviating the effects of Paget’s disease, much more remains to be done. 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.  In order to ensure that Paget’s is diagnosed and treated in a timely manner, the charity is launching a new clinical Guideline that will help raise awareness of the disease amongst health care professionals and facilitate effective treatment. Commissioned by the Paget’s Association, the Guideline is based on all current available evidence, has been written by a group of international experts in the field, with patient involvement, and has been endorsed by several major international organisations with an interest in Paget’s disease.

To aid communication across the health care system, the Charity has also recently launched a Paget’s Passport, which is a patient held record to help improve communication between healthcare professionals.

Many members of the Paget’s Association are getting involved on the 11th January by wearing blue and green, the Association’s colours, to show support and to help raise awareness of what can be a devastating disease.  Full details about all the Paget’s Awareness Day activities can be found on the Paget’s Association’s website - www.paget.org.uk

To mark the day the Association is holding a Paget’s Information Event at the Burrage Centre at the James Paget University Hospital from 1pm to 4pm with an online webinar between 2pm and 3pm that anyone can view. For more information please visit the Paget’s Association website above. 

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