Individual Experiences of Paget's Disease
Read the personal accounts of people with Paget's below. You will find further individual and more detailed experiences in the members' area of this website: Log -in here or Register Free here to become a member.
Free Paget's Information Days: follow this link for information.
Patron of The Paget's Association
A worldwide entertainer, business man and event’s organiser, British born Recardo Patrick first rose to fame as lead singer with the band Sweet Sensation who had a worldwide hit in 1979, with “Sad Sweet Dreamer”. He has worked alongside many other famous names including Michael Jackson, Whitney Houston, Elton John and Prince. Recardo came to be a Patron of the Paget’s Association after discovering that he had Paget’s disease. His work schedule is hectic, however, he recently took time out to talk to Diana, our Specialist Paget’s Nurse about his Paget’s disease.
Recardo was 48 when he began to experience pain radiating down his thigh. He had investigations which led to a diagnosis of Paget’s disease in his right pelvis. His endocrinologist prescribed an infusion of Zoledronate and Recardo has never looked back. Although he suffered flu–like side-effects for about 8 hours following the treatment, eventually the drug took effect and he became pain free. This was over 4 years ago and he has not had any pain or problems since. He is monitored each year and is very happy with the success of his treatment.
Recardo believes in keeping fit, training every day and partaking in extreme sports such as snowboarding. He is however, aware how disabling the complications of Paget’s disease can be in those who are severely affected, and hopes research can find a cure soon. He gives this advice to those who are diagnosed with the condition: “After the initial shock, get a good assessment, and if you need treatment don’t hesitate, Zoledronate relieved my pain and has given me long term benefit, enabling me to lead a normal life.” (2014)
"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 bisphosphonate infusions which helped my pain. I didn't have any side-effects and I have not needed treatment for the last 10 yrs.
Being a member of the Paget's Association is helpful because I know I am not alone. In addition, the information they provide is good and is constantly being improved. My advice to others is no matter how bad you feel there is always someone at the Paget’s Association who can share your worries and help." (2014)
"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)
“As a member of the Paget’s Association I find it helpful to know there are other people in the same situation and I can keep up with the treatments available. I started Risedronate but they didn’t agree with me so I had to stop taking them. I am going to have an infusion instead”. (2014)
“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”. (2014)
“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.” (2014)
You will find further individual and more detailed experiences in the member area of this website: Log -in here or Register Free here to become a member. If you are already an online member you will find them by following this link to the Members' Area.
In the Members' 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.
Liz had surgery to correct deformity of her leg.
John: Time to tell my story