HISTORY OF PAGET’S DISEASE & THE ASSOCIATION

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 a descendant of Sir James Paget as a Patron of the Charity. Sir 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. 

The Paget's Name

Sir James Paget's name was also given to Paget’s disease of the breast and extramammary Paget's, as well as other diseases, however, these have no other connection to Paget's Disease of Bone. If you require more information on Paget's of the breast, please contact Macmillan Cancer Support using the contact details on their website.

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 is 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

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 the need for worldwide awareness of Paget’s disease.

To support her work Ann raised funds by making, collecting and selling goods on the 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 1980s, 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 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.

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.”

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 all those years ago.

Sadly, Ann Stansfield died on 25th January 1995 but the work she began continues with the same aims today.

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.

The Paget's Association's Aims

The aims of the Paget's Association are to preserve and protect the health of those affected by Paget's Disease of Bone by
- providing information and support
- raising awareness of the condition, both within the medical and allied health professionals and amongst the general public 
- by supporting and funding research projects in the field of Paget's disease or its treatment.

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 helpline@paget.org.uk or by telephoning 0161 799 4646. We look forward to hearing from you.