Emanuela’s Story

Emanuela is a 57-year-old nurse who lives in Italy. She wanted to share her experience of Paget’s disease to help others.

When I had blood tests my alkaline phosphatase (ALP)   was often high but progressive pain in my left shoulder began to restrict my movement. This led to investigations such as Magnetic Resonance Image (MRI) and x-rays. These highlighted the presence of Paget's disease in my left arm (humerus). From there a series of examinations began and I went to San Raffaele Hospital where there is expertise in Paget’s. I had an infusion of zoledronic acid. After a couple of days of fever and nausea I was fine and it practically took all my pain away, especially at night, and my ALP is now in the normal range. 

The treatment gave me a better quality of life although I'm more serene than I was! I had to change jobs as I worked in the operating room. Driving for long distances is a little painful but I take rests. I take care not to strain my arm but I try to do everything I want to, just with more care and attention. For example, I try not to fall! I have a cat and also a dog, Sky, but she is very quiet. She is my happiness but sometimes she pulls too much on the leash and I have to hold her with two hands so as not to strain my Pagetic arm. I enjoy reading, cooking and mountain walks, and this year I am planning on walking the Camino de Santiago de Compostela in Spain (without Sky though) ... 100 km on foot! 

The best advice I can give to anyone newly diagnosed is to find a hospital where the specialists have experience of Paget’s disease. 

Emanuela