Doreen’s battle with Paget’s disease 

Doreen has shared her story here before and when we heard the sad news that aged 87 she had passed away, we knew that we had lost not only a loyal supporter but also a dear friend. The following is a little about her story and a tribute to an amazing lady. 

Doreen lived in Cumbria and was diagnosed with Paget’s disease ten years after she first noticed symptoms. Following a blood test in 2010, she was told there was damage to her liver and was advised to stop drinking alcohol. As she had not had alcohol for many years she asked for a scan but despite her pain this was refused. 

Doreen’s legs, pelvis and head were painful, her left arm began to bend and by April 2011 she had reached rock bottom. She saw her GP again who looked back at her records and explained that the level of alkaline phosphatase (ALP) in her blood had gradually been increasing over a ten-year period. When the ALP is raised it quite often indicates a problem with the liver but finally, at this point, Paget’s disease was suspected and she was relieved to be referred to a consultant in Lancaster. The result of a bone scan confirmed extensive Paget’s disease. She had treatment with zoledronic acid and whilst she felt quite poorly afterwards with flu-like side effects, her pain subsided. She was pain-free for some months before requiring further treatment.  

Her consultant provided literature about the Paget’s Association so she made contact and became a member, volunteer and friend. She found great comfort in the information and support she received. Writing for the Paget’s News magazine in 2012 Doreen said, ‘Get to know as much information about the condition as you can and absorb it. I truly believe that it helps take away the fear of the unknown. Involve your family, tell them about it so that they can understand and offer you moral support. Keep going and cope with the condition the best you can. Your life changes – accept and adapt. Realise that most people with a long-term condition can get very low but remember you are not on your own. Some days I miss being me! If you are not in a good place mentally, it will be difficult to deal with. The support and understanding of family, friends and the Association can help you through the difficult times’. 

Keen to help others and with the support of our Specialist Nurse Diana Wilkinson, one of the things Doreen did was to try to start a support group in 2013, in Keswick, Cumbria. Unfortunately, the meetings were not well attended and the group had to close. Diana commented, ‘Doreen’s battle with Paget’s disease wasn’t an easy one. I will always remember Doreen for being an incredible lady, with a positive outlook and someone who always wanted to help others. Our thoughts are with all her family and friends at this time’.  

Doreen joined the Association’s Support Network where she found mutual support and lifelong friends. In a previous magazine Doreen had commented, ‘I have friends all over the world now – we help each other’. Hearing of her passing Network member Maria Coteanu from Canada said, ‘She became a very dear friend. I miss her a lot. We became close despite the distance. I am very fortunate to have known her and I wish I could have met her in person. Her memory will be with me for years to come.’