Paget’s disease of bone-associated osteosarcoma (bone cancer)

Fundraising to tackle this rare bone cancerAllan Norma and Sophie
Born in Paisley, Allan Reid was diagnosed with Paget’s Disease of Bone at the age of 49. Last year Allan died, aged 57, from Paget’s – associated osteosarcoma, a type of bone cancer that is a very rare complication of Paget’s disease (less than 1:1,000 patients).
Paget’s disease disrupts the normal cycle of bone renewal and repair, causing bones to become weakened and deformed. The UK has the highest rate of Paget’s disease in the world. Often people with Paget’s disease don’t know they’ve got it until tests are carried out for another reason. It is however, the second most common metabolic bone disease after osteoporosis and symptoms can include severe pain, deformity and deafness. Yet doctors often know little about it.

A business man, Allan lived with his wife, Norma, in Newton Mearns, a suburb in southern Glasgow. He was diagnosed with Paget’s disease in his pelvis in 2007. Little did he know then that he would die from this rare complication of the condition just 7 years later. His wife, Norma explains the devastating effects of his illness, “Allan’s leg became very painful. He said it felt like it was in a vice. He was prescribed a repeat course of tablets for the Paget’s disease but they didn’t work. He went back to the consultant a few times and had many scans which threw up nothing abnormal. By this time he was walking with a noticeable limp. Eventually, he was diagnosed with Paget’s-associated osteosarcoma. Unfortunately, the cancer spread to his lungs and Allan died at home on 1st August 2014. The weeks preceding his death were horrendous. I wish more professionals and people generally were more aware of it. It took such a long time to diagnose his cancer because it is so rare for someone with Paget’s disease to develop associated cancer. Allan became a proud Granpa to our granddaughter, Sophie just 3 months before he died. She will never stop hearing about him”.

It is vital that more research into Paget’s disease and Paget’s-associated osteosarcoma is carried out. With this in mind Allan’s family, friends and colleagues set about fundraising for the Paget’s Association, a UK charity who support people with Paget’s disease. They have now raised over £4,500. Speaking about the charity Norma said, “When Allan was diagnosed with Paget’s disease we just didn’t realise the seriousness of it. It was only when we started to panic that we found the Charity’s website and Helpline details”.
Professor Roger Francis, Chairman of the Paget’s Association, explains how the funds they have raised will be used, “We want to ensure that the funds collected in memory of Allan are used to support research into the condition. We are pleased to announce that Alan’s family and friends have agreed that the funds should be used for a student bursary in his name, to help to support a young researcher working on Paget’s disease. It will be a fitting and lasting memory of Allan”.

Diana Wilkinson, Specialist’s Paget’s Nurse, of the Paget’s Association added “If anyone requires advice or support regarding Paget’s disease they can contact the Paget’s Association’s Nurse Helpline: [email protected] "  

TouKenny and Rachael BeforeKenny and Rachael aftergh Mudder

Well Done to Kenny Hoggan & Rachael Campbell who raised over £300 competing in Tough Mudder, an endurance event in Dumfries. Tough Mudder is a 10-12 mile military-style obstacle course designed to test physical strength and mental grit. Kenny and Rachael took up the challenge in memory of Allan, Kenny's uncle. Very well done and thank you both. 

Paget’s – associated osteosarcoma is a very rare complication of Paget’s disease. You can download an article by experts in Norwich and read about Allan Reid's full story in the May 2015 edition of Paget's News which can be found in the member's area. The Bone Cancer Research trust also has information on their website.