The 1st International Paget's Awareness Day

To watch a recording of our ONLINE PAGET'S INFORMATION MEETING (webinar), please follow this link for details.

Making an Impact

The Paget's Association declared the 11th January to be International Paget’s Awareness Day to raise awareness of Paget’s disease, both throughout the UK and internationally. We would like to thank everyone who got involved. Scroll down for details of events that took place on the day, a competition and photos. We will be adding to this as information comes in!

Why did we hold a Paget's Awareness Day?

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. Our mission on Paget's Day was to raise awareness of Paget’s disease and increase the number of cases that are satisfactorily diagnosed and referred to a specialist. Several events took place on the day.

Great Yarmouth

The main event was held at the James Paget University Hospital in Great Yarmouth. YOU CAN NOW WATCH A RECORDING OF THE WEBINAR by following this link.

First Live Online Broadcast by the Paget’s Association - We know that many people from across the world watched our first webinar in real time. If you were one of those watching, we would very much value your feedback.  Chaired by our outgoing Chairman, Professor Roger Francis, the meeting was the first to be broadcast live online, by the Paget’s Association. Professor Francis said, ‘The Paget’s Awareness Day will hopefully raise the profile of Paget’s Disease of Bone and highlight the work of the Paget’s Association. By broadcasting the meeting as a webinar, we will reach a wider audience across the UK and beyond.’ People also had the opportunity to have their questions about Paget’s disease, answered by the experts. These included questions from Australia and America, as well as the UK.

Support from Brandon Lewis MP

“I am delighted to support the first ever International Paget’s Awareness Day. The 11th January 2019 marks the 205th anniversary of the birth of James Paget, who was of course born and raised in Great Yarmouth, where our local hospital is named after him. Great Yarmouth is rightly proud of this famous son. Sir James Paget was one of the most respected surgeons of his time, regarded as the ‘Father of British Pathology’ and treating significant figures including Queen Victoria and the Prince of Wales. The Paget’s Association does a fantastic job providing information about treatment and diagnosis, giving help and advice, providing newsletters and support for those with Paget's disease of Bone. It is vital that we raise awareness of this disease, which affects the bones normal metabolism and can cause severe pain, fractures and disability. I’d like to thank everyone for taking part in the Paget’s Awareness Day for all that you do to ensure correct diagnosis and treatment for this disease and to wish you all the best for a successful day.” Brandon Lewis MP

New Guideline Accepted for Publication

The webinar was a fantastic opportunity to showcase the new clinical Guideline for the ‘Diagnosis and Management of Paget’s Disease of Bone in Adults’. This was commissioned by the Paget’s Association and has been accepted for publication in the Journal of Bone and Mineral Research. We expect it to be published in February 2019.  So that the document is freely available to everyone, the Paget’s Association has provided funds for the document to be made publicly available.  Update 26th Feb 2019 - The new Guideline has now been published - follow this link for details.

A 205th Birthday Celebration

A retired surgeon from the James Paget NHS Foundation Trust, Mr Hugh Sturzaker MBE, spoke eloquently about the life of Sir James Paget, who was born 205 years ago, on the 11th January 1814, in a house in South Quay, Great Yarmouth. Today, a blue plaque marks his birthplace. Sir James Paget was the first to describe several conditions, including Paget’s Disease of Bone. He was surgeon to Queen Victoria, and indeed, one of the most respected surgeons and pathologists of his time. The Paget’s Association is proud to have Sir James Paget’s great, great grandson, Sir Henry Paget, as a Patron and was pleased that he could attend the event in Great Yarmouth.

 Keith’s Experience

The patient’s perspective was provided by Trustee, Keith Simpson, who shared his personal experience of Paget’s disease. 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 of the Association. Keith said, ‘Until I found relief, Paget’s caused me tremendous pain and suffering.  It is imperative that we help those who haven’t yet found the answers and treatment that they so desperately need.

International Reach and a New Research Initiative

Our Specialist Paget’s Nurse, Diana Wilkinson, also gave a presentation and commented, ‘The first Paget’s Awareness Day and this webinar are fantastic ways of letting the world know that the Paget’s Association means business, in the fight against Paget’s disease.’ In addition, Diana informed the audience about the Association’s latest initiative, a Summer Vacation Research Scholarship, which will encourage medical, science, nursing and allied health professional students to develop an interest in researching Paget’s Disease.

Award Ceremony in Manchester Dr Stephen Tuck, our Vice-Chairman, attended a Paget’s Information Meeting at Manchester Royal Infirmary to present a Centre of Excellence Award to Professor Peter Selby and his team.

Information Meeting in Edinburgh Our new Chairman, Professor Stuart Ralston, held a Paget’s Information Event at the Western General Hospital in Edinburgh. Patients and staff were given the opportunity to hear presentations, by the research team, regarding some of the clinical trials and laboratory research that is taking place from the Institute of Genetics and Molecular Medicine.

Paget’s Meeting at Salford Royal Hospital An event was also held for patients and staff at Salford Royal Hospital, where Professor Terence O’Neill arranged the event to mark the first International Paget’s Awareness Day. 

Did you wear Blue and Green on Paget's Day? One way we asked for support was to ask people to wear blue and green, the colours of the Paget’s Association’s logo. Do send us your photos.

Enter our Photo Competition You could win a £25 shopping voucher plus a Paget’s Goody Bag by entering our Paget’s Day Photograph Competition. The theme is blue and green, which means that we want you to take a photo of anything, as long as the blue and green theme is adhered to. You could, for example, take a photo of a country scene with blue sky and rolling green hills, or blue flowers in a green vase, or a photo of yourself and your family wearing blue and green. The possibilities are endless! PLease see the rules below and send your photograph by email or post using the details below. The closing date is the 30th January 2019. Email your entry to - [email protected] Alternatively, post to Paget’s Day Competition, The Paget’s Association, Suite 5, Moorfield House, Moorside Road, Swinton, Manchester, M27 0EW. 

Many of you have been knitting in blue and green for us - thank you! There will be photos in our newsletter. 

ADD THE 11TH JANUARY, TO YOUR CALENDAR EVERY YEAR! 

We would like everyone who got involved. 

 Help make every Paget’s Awareness Day a success. Put the 11th January on your calendar and do something, however large or small it may be, to help us raise awareness of Paget’s disease on this special day!

Competition Rules. The competition is for members of the Paget’s Association only. The winner will be selected at random from the correct entries. The Paget’s Association’s decision is final. Winners will be notified within one month after the competition closing date. The prize is non-negotiable, non-transferable and there is no cash alternative. Only one entry per household. The competition is only open to UK residents. The competition is not open to employees or their immediate family. The competition is not open to trustees of the Paget’s Association or their immediate family. The Paget’s Association cannot accept responsibility if emails or hard copies are not received. Incorrectly completed entries will be disqualified. Entries received after the specified closing date will not be accepted. When you enter the competition, you agree to the above rules.