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The National Association for the Relief of Paget's Disease was founded and registered as a charity in 1973, with the following aims:

• To offer support and information to Paget's disease sufferers.
   
• To sponsor research into the causes and treatment of the disease.
   
• To raise awareness of the disease among the medical profession and the public.

Its founder was the late Mrs Ann Stansfield MBE, whose husband suffered with Paget's Disease for 27 years. Mrs Stansfield had difficulty in finding understanding and interest in, or treatment for, her husband's condition. Although retired herself, she worked tirelessly for many years to raise awareness of the condition, spending many hours writing to universities, hospitals and government departments at home and abroad. Her determination and tireless fundraising enabled many research projects to be undertaken into the causes of the disease, as a result, there is a much better understanding of it.

What is Paget's Disease?

Paget's Disease of Bone is a metabolic bone disorder of unknown origin which normally affects older people. Bone is a living tissue and is constantly being renewed. Paget's disease of bone causes an increased and irregular formation of bone as the bone cells, which are responsible for dissolving the body's old bone and replacing it with new, become out of control. Over a period of time the deformed new bone becomes larger, weaker and has more blood vessels than normal bone. Unlike normal bone, the structure is irregular and consequently weaker, which makes it prone to fracture even after a minor injury.

In its mildest form the disease has no symptoms. In more severe cases the pain can be intense. The relentless progression of the disease may cause bones to bow, the skull may increase in size and the spinal column may curve. As the bones enlarge they may cause pressure on nearby nerves which can result in muscle weakness. In the case of severe skull enlargement this pressure can result in deafness, disturbed vision, dizziness and tinnitus.

There are thought to be between 750,000 and 1,000,000 sufferers of Paget's disease in the United Kingdom so it is fortunate that only a small proportion of all patients experience significant symptoms.

Paget's Disease - the facts