Sheila had never heard of Paget’s disease 

Sheila found support from the Paget’s Association’s Network. This is her experience in her own words. 

Several years after being diagnosed with arthritis in my hip, I reluctantly went to my GP because the pain had become much worse. I was given painkillers, and unable to walk very far, I took to using a walking stick... 

Much later, I was referred to a consultant at the Norwich and Norfolk University Hospital and after two years of appointments, it was suggested that I should have a total hip replacement. During the long wait for my operation, however, I fell several times which resulted in my having a scan. Things changed when I was told the scan showed arthritis and Paget’s disease. ‘What’s Paget’s disease’, I enquired. I’d never heard of it. No one seemed to want to explain - but perhaps it was because they couldn’t! 

I spent fifteen days in hospital following my hip replacement, after which I was taken home. No aftercare was offered and I felt abandoned. My son and daughter live miles away but I had to make quite a few phone calls to them. Eventually after several months, with the aid of a four-wheeled walker that my son and daughter bought me, I was able to walk down the path. Although I was still in great pain, with my walker for support, I was determined to attend a meeting in Norwich on Paget’s disease, which I had seen advertised in a local paper. 

The meeting was one of the Paget’s Association’s Information Days. It was very interesting and opened my eyes to the number of people suffering silently with Paget’s disease. My story really begins after I became a member of the Paget’s Association and the Paget’s Support Network. I was put in touch with people from all over the world who also have Paget’s and who wanted to connect with others in the same position. I was amazed, as I had felt so alone. The Paget’s Association helped me connect with Rhoda, who also lives in Norfolk. Unbelievably, after a long chat, she told me she was seeing her consultant the next morning. She would ask him if he could see me. 

It wasn’t long before all the appropriate arrangements had been made and I received an appointment. As soon as I saw the consultant at his desk, I knew here was somebody who would understand my pain and explain it all to me. He immediately ordered a bone scan, which revealed Paget’s in my pelvis, left tibia, coccyx and both feet and there was a hairline fracture in my pelvis! No wonder I was in a lot of pain. After assessment of my medical history, he prescribed appropriate treatment. I felt so much better - like a 25-year-old! I will always be eternally grateful to Rhoda and to the Professor for his explanation and medical help. At 90 years old, I have resigned myself to make the best of everything. 

Sheila