History of Paget’s Disease & the Association
You may also be interested in The Paget's Association Timeline
Why "Paget's" Disease?
Sir James Paget studied the condition it in great detail and wrote his first paper about it in 1877, describing it as osteitis deformans because he suspected a basic inflammatory process. We now know this wasn't the case but his extensive work is highly regarded and in 1888 Sir Jonathan Hutchinson, writing in the British Medical Journal, referred to osteitis deformans as Paget's Disease of Bone. We are pleased to have two of his descendants, as Patrons of the Charity. Patron, Lt. Col. Sir Julian Tolver Paget, is the great grandson of Sir James Paget and Patron, Mr Henry Paget, is Sir James Paget's great, great grandson.
Sir James first paper on the condition was titled "On a form of Chronic Inflammation of Bones" and published in the Medical Chirurgical Transactions, 1877, (60) 37–64.9. This was a medical journal published from 1809 to 1907.
His name was also given to Paget’s disease of the Paget's Disease of the breast and genitals however, these have no other connection to Paget's Disease of Bone. If you require more information on these conditions please contact Macmillan Cancer Support -using the contact details on their website: www.macmillan.org.uk
Sir James Paget
Sir James Paget, 1st Baronet (1814 – 1899) was an English surgeon and pathologist who is best remembered for Paget's disease and who is considered as one of the founders of scientific medical pathology. In 1876, Sir James Paget published a paper regarding a form of chronic bone disease which he called osteitis deformans. No one before him had recognised and studied it as closely as he did. His paper described five cases of a chronic bone disease and his main illustrative case was that of a man who he had been observing for over twenty years. The patient was a 46 year old coachman (see his drawings of him below) who first visited St Bartholomew’s Hospital in 1854 suffering from pain in his lower limbs. He had the good fortune to be seen by Dr James Paget, who described “a chronic form of inflammation of the bones”. Dr Paget observed that the patient’s left shin bone and his left thigh bone were enlarged and misshapen. No other abnormality was noted. It was a condition which Dr Paget had not encountered before and he was therefore, unable to make a diagnosis. In the years that followed the bones of the man’s right leg also became enlarged and eventually, his legs became bowed to such an extent that he could not bring his knees together. At the same time his skull became so large and deformed that he had to buy larger and larger hats.
Dr Paget cared for his patient over many years and when he passed away carried out a post mortem. Microscopic examination of the bones showed a dramatic aberration in the bone remodelling process that normally continues throughout life and he thought it was inflammatory in nature so he called it osteitis deformans. Modern day techniques have shown us that the disease in not an inflammation. It is now known to be an abnormality of bone remodelling due to an increase in bone cell activity.
James’ original description of the condition was excellent considering the investigative techniques available to him at the time and he taught us a great deal about the condition.
James Paget published many articles on various aspects of pathology and surgery. He was one of the first surgeons to correlate patient's symptoms with the clinical examination and as such to develop many of the ideas of clinical surgery. His name is associated with several other conditions as well as Paget’s Disease of Bone.
It was eventually realised that the bone disorder is not the rare condition it was once thought to be, and that many older people have one or more bones affected by the disease, even though they may not be experiencing any symptoms.
You can read more by downloading the following documents;
Download (PDF) a Biography of Sir James Paget
Download (PDF) A FAMILY LEGACY by Sir Julian Paget
THE PAGET'S ASSOCIATION
Ann Stansfield MBE
The Paget’s Association has always aimed to improve things for all those affected Paget’s disease and this year the Association celebrates 45 years dedicated to providing information, support and funds for research.
It was in 1973 that the Association was founded directly out of need, by the late Mrs Ann Stansfield MBE. When her husband Alf was diagnosed with Paget’s disease they experienced considerable difficulty obtaining information about the condition so Ann spent many hours corresponding with hospitals, specialists and universities all over the world in an attempt to learn and raise awareness of Paget’s disease.
Through sheer determination and persistence, Ann not only made progress but also began to support many people affected by Paget’s disease. Ann built up and maintained a meticulously handwritten register of sufferers with whom she corresponded regularly. Even when visiting family in Australia, Ann didn’t miss an opportunity and went on local radio to publicise the effects of, and need for worldwide awareness of Paget’s disease.
To support her work Ann raised funds by making, collecting and selling goods on local market. Ann‘s commitment never diminished. Aided by an old-fashioned typewriter she gradually attracted the attention of specialists with a particular interest in Paget’s disease. She gained support from Dr Allan St. John Dixon and the Rehabilitation and Medical Research Trust and so in 1973 Dr Dixon helped Ann to establish the Charity, The National Association for the Relief of Paget’s Disease, which remains our official title, however, day to day we use the Paget’s Association. Dr Dixon was the first Chairman of the charity and subsequently served as Honorary President until 2011.
With Ann Stanfield’s sheer determination and tireless fundraising, the Association went from strength to strength, many people were supported and research projects were undertaken into the causes of the disease.
In the late 1980’s, Professor David Anderson, a consultant at Hope Hospital, Salford, asked his secretary, Tricia Orton, to assist Ann with the various tasks involved in administering the Charity. As Ann’s health deteriorated Tricia took over the administration work.
In 1983, Ann’s work was recognised when she received the MBE.
The first organised local support group began in 1990, in Manchester, and supported many patients, carers and family members as they shared their experiences and knowledge of the condition.
Sadly, Ann Stansfield died on 25th January 1995 but the work she began continues with the same aims today.
The aims of the Paget’s Association
- To offer support and information to those with Paget’s disease
- To raise awareness of the disease among health professionals and the public
- To encourage and fund research into all aspects of Paget’s disease
Professor Allan St. John Dixon OBE MD FRCP
Professor Allan St. John Dixon helped Ann establish the National Association for the Relief of Paget’s Disease (NARPD). He was the first Chairman of the charity and subsequently served as Honorary President until 2011. In addition to his role with the NARPD, now known as the Paget’s Association, Allan helped to establish the National Osteoporosis Society, National Ankylosing Spondylitis Society and Remedi, a charity that supports research into rehabilitation. Allan was a consultant rheumatologist at the Royal National Hospital for Rheumatic Diseases from 1966 to 1986. He received an OBE for his services to medicine and set up a number of national charities. Allan, aged 92, sadly passed away in 2014.
2018: Celebrating 45 Years
In 2018, the Paget’s Association celebrated 45 years devoted to supporting to all those affected by Paget’s disease. We achieve this by providing advice and information, by funding research and through projects such as the Centres of Excellence and a new clinical Guideline which we hope to publish soon.
When Ann Stansfield’s husband, Alf, was diagnosed with Paget’s disease she was dismayed that there was nowhere she could take him to be treated. They experienced considerable difficulty obtaining information about the condition. Determined therefore, to help her husband, Ann spent many hours corresponding with hospitals, specialists and universities all over the world in an attempt to learn about Paget’s disease and to raise awareness of it. Through sheer determination and persistence, Ann not only made progress, but also began to support many other people who were affected by Paget’s disease. Even when visiting family in Australia, Ann didn’t miss an opportunity and went on local radio to publicise the effects of, and need for worldwide awareness of the condition.
The Birth of the Paget’s Association
Ann‘s commitment never diminished and aided by an old-fashioned typewriter from her home in Middleton, Greater Manchester, she gradually attracted the attention of specialists with a particular interest in Paget’s disease. Ann gained support from Dr Allan St. John Dixon and the Rehabilitation and Medical Research Trust, which led, in 1973, to Dr Dixon helping Ann establish our Charity, ‘The National Association for the Relief of Paget’s Disease’, which remains our official title. In day to day use, however, this has been shortened to the ‘Paget’s Association’. Dr Dixon was the first Chairman of the Charity and subsequently served as Honorary President until 2011. He was a consultant rheumatologist at the Royal National Hospital for Rheumatic Diseases, in Bath, from 1966 to 1986. Dr Dixon received an OBE for his services to medicine. He, sadly passed away in 2014, at the age of 92. To support her work, Ann raised funds by making, collecting and selling goods on the outdoor market in Oldham, three times a week. The Charity went from strength to strength, many people were supported and research projects were undertaken into the causes of the disease. Alf passed away aged 77, on the 8th April 1984. He had suffered for at least 27 years with Paget’s disease. In the Association’s newsletter Ann wrote, “It was his wish for ‘No flowers but if desired, donations to our cause’. I hope to continue this work in his memory.”
Salford Paget’s Disease Service
In the late 1980’s, Professor David Anderson, a consultant at Hope Hospital in Salford (now Salford Royal), asked his secretary, Tricia Orton, to assist Ann with the various tasks involved in administering the Charity. Professor Anderson established the Salford Paget’s Disease Service. As Ann’s health deteriorated Tricia took over the administration work and the Charity’s office moved from Ann’s front room to Hope Hospital.
In 1983, Ann’s hard work was recognised when she received the MBE.
The first organised local support group began in 1990, in South Manchester, and supported many patients, carers and family members as they shared their experiences and knowledge of the condition. The late Ron Taft became involved with this group and you can read more about Ron on page ?
The Good Work Continues
In Ann’s final letter to members, during the summer of 1991, she wrote, “I would ask you all to continue giving your support whenever and wherever possible so that together we can overcome the problems facing sufferers and ultimately reach the goal towards which we are all working”. Since then there has been considerable improvement in the treatment of Paget’s disease, however, Ann’s message still applies. The Charity needs the support of its members to be able to continue. Ann passed away, aged 85, in 1995 and the headline in the local newspaper read, ‘Farewell to Mrs Charity’. All those involved with the Paget’s Association today, are committed to building on the work that Ann started from her front room forty five years ago.
The Team Today
Our Patrons include, Sir Henry Paget who is the great great grandson of Sir James Paget, a pathologist and surgeon, whose name was given to Paget’s disease. Our Honorary President, Graham Russell, is a Professor of Musculoskeletal Pharmacology. He has played a central role in studying the biological effects of bisphosphonates, and in their clinical development and evaluation for the treatment of bone disorders, including Paget’s disease. Led by Chairman, Professor Roger Francis, the Board of Trustees is made up entirely of volunteers, with various skills, who all strive to make a difference to the lives of those with Paget’s disease. Members of the current board include people who have personal experience of Paget’s disease, researchers and clinicians.
Diana Wilkinson, is our Specialist Nurse. She has been employed by the Paget’s Association for 6 years. She maintains and develops the Charity’s support services which include the Nurse Helpline, and our evidence based literature. She introduced a new Support Network and online Forum so that those with Paget’s could talk easily to others. Diana plans the agenda for our Information Days, ensuring expert speakers are on hand to answer questions. She also gives talks and represents the Association at conferences and events where she educates many who are involved in the care of those with Paget’s disease. Diana also facilitates a support group in north Manchester and for the last few years has been responsible for the production of our newsletter and the management of our website. Sue Clegg, our Office Manager, has been with the Association for twenty years, the last seven of which have been in her present position. As can be deduced from her title Sue takes responsibility for the day to day running of the Association’s office. In addition to responding to members’ enquiries, she has to respond to an extremely wide range of new government initiatives, which have included work related pensions, and more recently, the new General Data Protection Regulations, coming into effect on 25th May this year. Sue works closely with the Trustees in managing the finances of the Association, and ahead of their quarterly meetings provides all the relevant documentation and paperwork which will form their agenda. She produces the minutes of all meetings including the Annual General Meeting. Organising our Information Days and determining venues falls within her remit, as do fundraising activities such as the 200 Club, the London Marathon and the Ride London 100 cycle event. In addition, this year (2018) we have employed a part-time Membership and Communications Administrator.
Ann would be proud of the many achievements of the Association over the years. Recent developments include the Paget’s Association Centre of Excellence scheme and the development of a new Clinical Guideline for Diagnosing and Treating Paget’s disease.
Can we Help You?
It is important that we remember why Ann Stansfield set up the Paget’s Association, however, needs can change and it is therefore, important that you, our members, continue to tell us what you think the Charity can do to support you. You can let us know by email to [email protected] or by telephoning 0161 799 4646. We look forward to hearing from you.