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Karen shares her experience

Karen’s Diagnosis was a Complete Surprise
Karen lives in Queensland, Australia. She enjoys swimming, reading and photography. Before retiring, she worked in administration. Karen shares her experience below. 

Lynda's Symptoms and Treatment

Lynda's Story of Paget’s Symptoms and Treatment

Lynda lives in Rhode Island, United States and was diagnosed with Paget’s disease when she was fifty-five. Here she explains how Paget’s disease has affected her. 

Maureen had an infusion

Infusion for Paget's Disease

Maureen is a retired lab technician who enjoys cross country running and swimming.

'I have Paget’s disease in my right shin (tibia). I am careful how much stress I put on it, so I tend to do my training on soft ground.  I had an infusion in 2012. Since then, I have had no pain'.


Detailed stories

Our Experiences of Paget's

You will find the following detailed accounts of experiences in the Members' section of this website.

Allan's dancing again - a success story

Keith needed surgery

Irene's experience of diagnosis and treatment.

Doreen explains how it took 10 years to get a diagnosis.

Simon had surgery to have his leg straightened

Mike's Diagnosis took a Long Time

Paget's in My Family

Mike is a member of the Paget's Association

“My mother had Paget’s disease. It took the hospital a long time to diagnose me but I know much more about it now that I have joined the Paget’s Association.”


Discover detailed individual experiences and more by in the Members' Area.


Margaret found Support

Margaret came to a Paget's Information Day

“I have Paget’s disease in my pelvis and some in my spine. I attended one of the Paget’s Information days. I found it very useful and enjoyable”. I have joined the Paget’s Support Network and will do my best to contact other sufferers”.

Simon had his leg straightened

Straightening my leg

Part 1 -  (from Paget's News May 2017)

I was diagnosed with Paget’s Disease of the right tibia in 2014, at the age of 55. I have had 3 intravenous bisphosphonate infusions at the RNOH, with a good result but I was left with the classic sabre-shaped bowing of the tibia, both forward and outwards. This was gradually damaging my knee and ankle joints, walking was painful and I needed to use a stick.

John has Paget's in his Pelvis

John Found the Paget's Association

"I have Paget's Disease in my pelvis and have known about it since 1991. The Consultant thought I’d had it since about 1974 and as far as I'm aware I have no family history of it. I was given a bisphosphonate infusion, which helped my pain. I didn't have any side-effects and I have not needed treatment for the last 10 yrs.


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