The PagetAlert Campaign - shortening the pain journey

PagetAlert 

Announcing our new campaign to drive early diagnosis

The Paget’s Association's campaign PagetAlert is set to drive our mission for earlier diagnosis and to reduce the pain and anxiety for those living with the condition. For those at risk of Paget’s disease or with a family history, early intervention can control symptoms and reduce progression. Unfortunately, even today, we know from our experience supported by a recent e-survey* that many are suffering unnecessarily from the impact of bone pain despite effective treatment being available.
PagetAlert has an ambitious target of £75,000 which will help us to address the delays in diagnosis of Paget’s disease that can lead to unnecessary complications, including pain, bone deformities and fractures.

All our funding comes from donations and legacies so please support us by contributing to:
• reduce diagnosis time
• ensure pain is properly managed

The Paget’s Association will also continue to:
• encourage new research to evaluate potential genetic testing to identify those at most risk
• provide accurate and up-to-date clinical guidelines, resources and quality support
• still be here for you, your families, and future generations in years to come

Insights from people with bone pain in Paget’s disease*

~45% reported >3 years to diagnosis

~20% waited >5 years for a diagnosis

>90% reported that bone pain impacted QoL**

2 in 3 stated that bone pain affected mental health

Participants were asked to describe their pain before diagnosis. Their answers are represented in this wordcloud.

Participants were asked about the impact of symptoms on QoL** The results are illustrated in the wordcloud below.

To support PagetAlert please donate or get in touch.

*An e-survey was conducted by the Paget’s Association to gain deeper insights into the journey of individuals with bone pain before diagnosis. The response rate was 10.4% and data from 51-52 people was reviewed.

**QoL is a measure of a person's well-being that considers both positive and negative aspects.