Learn more about Paget's Disease - Set of 3 DVDs Available Now
Almost everything you ever wanted to know about Paget’s Disease can be found on this set of 3 DVDs. Expert speakers discuss many aspects of Paget’s disease including causes, treatment and research.
The filming took place at our Paget’s Information Day in September 2017. If you were not able to attend the event or you want a reminder about what was said, then these DVDs are for you. The total viewing time is approximately three hours and the DVD set is available for just £5 plus £3.50 postage and packing.
You can either order online or print the order form and post it to us or telephone 0161 799 4646.
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DVD 1: Experts Discuss Paget's Disease of Bone
Experts discuss Paget's Disease: what it is, the causes, incidence, and distribution, and also the production of new Guidelines. Professor Graham Russell introduces the expert speakers. Dr Daroszewska discusses what Paget’s is. Professor O’Neill considers the causes, distribution and incidence of the condition, Professor Stone examines treatment and Dr Tuck updates the audience on the new Professional Guidelines.
DVD 2: Paget’s Research plus Patients Question Experts about Paget’s Disease
Professor Layfield, Dr Burrell, Dr Green and student, Jasmine Sanghera, discuss aspects of research into Paget’s disease. Professor Roger Francis then leads the Question and Answer session.
DVD 3: Patient Experience and the Benefit of Research to Patients
Professor Fraser discusses how past, current and future research benefits patients. Simon Leigh, explains how his pagetic leg was straightened and how he coped with the aftercare. Our Specialist Paget’s Nurse, Diana Wilkinson, reflects on how Paget’s disease can affect individuals and how the Paget’s Association provides advice and support.
Each year the Paget’s Association manages to achieve something that is actually quite an exceptional event, and that is the opportunity to meet and ask questions, on all aspects of Paget’s disease, of many experts from around the UK, who are all in one place, for the benefit of patients. Our latest Paget’s Information Day was held in Manchester, and what a fabulous opportunity it was for those attending to talk to clinicians who care for patients, and to researchers who work hard to progress understanding and treatment of the condition. There is the added bonus to be able to talk and share experiences with others who have Paget’s disease.
Understanding Paget’s Disease. Our Honorary President, Professor Graham Russell, welcomed the audience and chaired the morning session. A loyal supporter of The Paget's Association, Professor Russell is Emeritus Professor of Musculoskeletal Pharmacology, carrying out research within the Botnar Research Centre, Oxford and the Mellanby Centre for Bone Research, Sheffield. Professor Russell was involved in the clinical development of bisphosphonates, and has played a central role in studying and evaluating the biological effects they play in the treatment of bone disorders, including Paget’s disease. The first speaker was Dr Anna Daroszewska from Liverpool who explained the current understanding of the underlying mechanisms driving Paget’s disease. Following this Professor Terence O’Neill, from Salford, discussed the incidence, distribution and causes of Paget’s disease.
Treatment. The audience was keen to ask questions regarding treatment. Professor Mike Stone discussed this and included a case study. He emphasised that Bisphosphonates remain the treatment of choice, this is because they are generally well tolerated, and have a long lasting effect.
New Paget’s Guidelines. The Paget’s Association is committed to driving up standards by developing new evidenced-based guidelines to help professionals care for those with Paget’s disease. Our Vice-Chairman, Dr Stephen Tuck, explained how he formed a committee involving many experts who will produce the Guidelines. The project is being funded jointly by the Paget’s Association, the European Calcified Tissue Society and the International Osteoporosis Foundation. When the new Paget’s Guidelines are available, we will, of course, tell you in our Paget’s Newsletter.
Patient Experience. Patient, Simon Leigh, who you may have read about in previous newsletters, joined us to share his experience of Paget’s disease. Having suffered severe knee and ankle pain, he had made the decision to have his bowed leg straightened. The surgery took place at the Royal National Orthopaedic Hospital in Stanmore. Simon described how the bones in his leg were broken and a frame fitted, which allowed daily adjustments to his leg. He explained how he and his wife coped with this and all the care he needed to achieve his goal.
Support. Our Specialist Paget’s Nurse, Diana Wilkinson, highlighted the many effects Paget’s disease can have on individuals and the difficulties they can face. She stressed that the Paget’s Association puts people affected by Paget’s disease at the centre of everything the Charity does and informed the audience of the work the Association is doing to help improve patient experience.
Osteosarcoma Research. Research is important to the Paget’s Association and its members and it was high on the agenda as we welcomed back one of last year’s Student Research Bursary awardees, Dr Darrell Green, from Norwich, who updated us on his research into Paget’s disease and the rare complication of osteosarcoma (bone cancer).
Learning from the Past. Professor Rob Layfield, from the University of Nottingham, joined us to give an update on the ongoing Paget’s research at Norton Priory in Runcorn, Cheshire. A number of researchers from different universities are involved in this multi-disciplinary project, which focuses on trying to understand why so many of the medieval skeletons at Norton were affected by a particularly severe form of a disorder resembling modern day Paget’s disease. It is hoped that the ongoing research will answer a number of questions including why this ancient Paget’s disease was so common at Norton Priory.
New Bursaries Funded. This year the Paget’s Association awarded two Student Research Bursaries. Each was for £6,000 and made possible by generous funding received from Sir Henry Paget and his sister, Olivia, and the Michael Davie Research Foundation (registered charity number: 803202). We give our thanks for such generous contributions to our student research programme.
The Sir Julian Paget Bursary. When Patron, Sir Julian Paget, died last year, the Trustees of the Association decided that a fitting tribute would be to name a Student Research Bursary in his honour. We therefore, offered, the Sir Julian Paget Student Research Bursary to a promising scholar.
Sir Henry Paget is the great great grandson of Sir James Paget, after whom Paget’s disease was named. He is also a Patron of the Association and we welcomed him to our Information Day to present the Sir Julian Paget Student Research Bursary Award to Jasmine Sanghera from Norwich Medical School. You can read about Jasmine’s research project in our November Newsletter (you will find our newsletters in the members' area of this website).
The Michael Davie Bursary. We welcomed back Dr Michael Davie a former Trustee of the Paget’s Association, to represent the Michael Davie Research Foundation and present the Michael Davie Student Research Bursary Award. Following a rigorous application process, the Trustees of the Paget’s Association decided to award the bursary to Jack Beard, from the University of Oxford. Information regarding Jack’s Paget’s research project can be found on page 9 of our November 2017 newsletter. Jack said, "I am delighted to receive this award and very grateful to the Paget's Association for the opportunity to research this significant skeletal disorder. I have a strong interest in musculoskeletal science and am very excited to venture into this field with help from this bursary."
Research: Past, Present and Future. Professor Bill Fraser from Norwich rounded off the day with an excellent talk on how past, current and future research makes a difference for patients.