|Paget’s Awareness Day, is an opportunity to raise the profile of Paget’s Disease of Bone and the 11th of January 2019 is the anniversary of the birth of Sir James Paget, whose name was given to the condition. Through research, including that funded by the Paget’s Association, there has been great progress in alleviating the effects of the condition, however, there is still much to be done. It has been estimated that as few as 7% of those who have x-ray evidence of Paget’s disease actually come to medical attention. Wouldn’t it be something if we could find all those suffering in silence who are yet to have their condition acknowledged? On the 11th January 2019 we are promoting a new clinical Guideline and a new patient Passport to help improve management, communication and also raise awareness.
Bone is living tissue and normally renews and repairs itself without any problems. In Paget’s disease, this process is abnormal and impacts on the structure of any bone that has Paget’s. People who have Paget’s disease can sometimes have no symptoms, however, at the other end of the scale, it can be a very painful and disabling condition.
The Paget’s Association is a UK charity supporting patients, funding research and raising awareness of Paget’s disease. We need people to get involved, support Paget’s Awareness Day and in doing so, help us find those suffering in silence who have yet to be assessed by a specialist.
The 11th of January 2019 is the 205th anniversary of the birth of Sir James Paget. He studied Paget’s disease extensively and had his first paper published in 1877. Later, the condition came to be known as Paget’s Disease of Bone.
To celebrate the first ever Paget’s Awareness Day, the Paget’s Association is launching the Paget’s Passport. This is a patient-held record of Paget’s disease. It can be taken to all medical appointments to help improve care and communication by recording key information.
The Association is also promoting a new clinical Guideline that has been developed by experts to provide recommendations for the diagnosis and management of Paget’s disease. It provides direction to professionals, giving them a base on which to make decisions, and facilitates discussion with patients. We want the new Guideline to be used by every single doctor who sees a patient who may have Paget’s disease. Further information can be found on our website.
The Paget’s Association is making great strides to raise awareness of Paget’s disease, but we need people to get involved. Mark the day by wearing blue and green – the colours of the Paget’s Association’s logo. If you like, take a photo and share it on social media, and don’t forget to tell people why you are doing it.
Please support Paget’s Awareness Day on the 11th January and help relieve the suffering of those who are either not yet diagnosed or who are not receiving the help they need. On our website and in our newsletter there are ideas of ways you can help raise awareness.
You can call the Association (0161 799 4646) or even make a donation to help support our work.
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Paget’s Awareness Day 2019
January 11 2019