There are many ways you can share your experiences of Paget's Disease which can benefit others experiencing similar problems. You can also connect with others for mutual support. Here are some ideas:
- Paget's Support Network
Join our Network.
Members of the Paget’s Association can join our Paget’s Support Network. This is a free, mutually supportive network to enable members to talk or write to others who either have Paget’s Disease or who care for someone who has the condition. Please log in to see the information in the Member's Area.
- Support Group
Currently, there is just one support group (in Manchester), however, we are always looking for people to help set up new groups. Information regarding the group can be found in our members’ newsletters and in the Member's Area of this website.
- Paget's Online Forum
You can share your experiences, ask or answer a question and take part in a poll on our online forum on the HealthUnlocked website. Search for Paget’s Association on www.healthunlocked.com
- Linda's experience of Paget's disease
"In 1993, I was diagnosed with Paget's Disease in my skull, spine, and right femur. Paget’s hadn't been diagnosed in my family before but I am sure my maternal grandmother had it. I was very lucky in being referred to an excellent consultant. I did have side effects from Pamidronate but I am fine with Zoledronate which I had 3 years ago. It worked well and now in 2014, I am still pain free. If you are diagnosed with Paget's Disease please don’t worry there is treatment and lots of help. Being a member of the Paget’s Association is absolutely brilliant. I needed help when I was diagnosed and lucky found the Association. The rest is history. They are so helpful and supportive". (2014)
In the Member's Area:
Irene's experience of diagnosis and treatment.
Doreen explains how it took 10 years to get a diagnosis.
Jean discusses Paget's disease and how she obtained treatment in South Africa.
Rhoda's life with Paget's.
Mary found that treatment relieved the pain that had previously made everyday activities difficult.
- Share your Experiences
We know that those with Paget’s disease appreciate hearing the experiences of others with the condition. Do get in touch with us if you are willing to share your story, for the benefit of others, on our website and/or in our newsletter. Email: [email protected]
Read about the experiences of others by following this link. There are also more detailed individual experiences in the Member's Area.