Hundreds unaware they have Paget’s disease

Posted on in Services, Support groups

Rheumatologists at The James Cook University Hospital are urging people to be more aware of Paget’s disease – a common bone disorder which affects hundreds of people across the region without many of them even knowing about it.

Rheumatologist Dr Stephen Tuck and chemical pathologist Dr Stewart Pattman with Diana Wilkinson of the Paget’s Association

Paget’s disease is characterised by excessive breakdown and formation of bone which results in weakened bones that can lead to pain, misshapen bones, fractures, and osteoarthritis.

But many people have no symptoms at all so they do not even realise they have the disease unless it is discovered by a chance when the patient is having an x-ray or blood test for another problem.

Dr Stephen Tuck, consultant rheumatologist at James Cook and vice chair of the Paget’s Association, said the disease affects 1% to 3% of over 55s.

“A large number of people have Paget’s disease but do not know about it,” he said. Or if they have been diagnosed by their GP they think there is not a lot you can do about it, which is not true.

“The number of Paget’s patients we are seeing is nowhere near the number actually out there.

“We are urging anyone over 55 with painful or misshapen bones to see their GP and anyone who has been diagnosed with Paget’s disease to ask about the treatments available.”

Paget’s can be controlled using medication that can be given as tablets or through a drip directly into the blood stream.

Early treatment can eliminate pain, prevent future fractures and stop problems spreading to the body’s nervous system which could lead to issues such as leg weakness or sciatica.

Diana Wilkinson, healthcare and education officer for the Paget’s Association, recently visited James Cook to see the range of clinics available, help raise awareness and promote the charity’s first information day in the area.

Patients, carers and health professionals are invited to attend the Paget’s Information Day on Wednesday 14 May 2014 at the Middlehaven Conference Suite, Riverside Stadium, Middlesbrough, from 10am to 3.30pm.

Diana said: “The day is free to attend and it is open to anyone who is interested in Paget’s disease. Those attending will be able to question a range of experts and it is also a great opportunity to meet others with the same condition.”

To book your place call 0161 799 4646. For more information visit www.paget.org.uk

Did you know?

  • Paget’s disease is a bone disorder that occurs more commonly as we get older.
  • Paget’s is characterised by the excessive breakdown and formation of bone, (bone remodelling).
  • The pelvis, femur, and lower lumbar vertebrae are the most commonly affected bones.
  • The UK has the highest prevalence of Paget’s in the world
  • By the age of 80 Paget’s presents in approximately 8% of men and 5% of women