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Different patients' perceptions of how Paget's disease affects them:

On the disease

"I suffered from this pain for years and my head was getting so big I couldn't wear my crash helmet any more, and then thank goodness I happened to move to a new area and my GP instantly sent me for specialist tests and Paget's disease was diagnosed."

"Two years ago I went to a family wedding and found I was having to explain to people I had known for years who I was. Later, when I looked at the photographs I really had difficulty recognising myself. My head has now grown so large that hats no longer fit me. When I told my doctor this, the only advice was 'to buy a bigger hat'! It is very distressing when I look in the mirror and its someone else's face looking back at me."

"I have been subject to Paget's disease for the past 5 years, and it still surprised me how many people are ignorant of the disease, and how very painful the parts of the body it 'attacks' can become."

"My consultant didn't know whether I had Fibrous Displasia or Paget's but said it didn't matter because there wasn't any treatment for either condition, just take the painkillers and come back for more X-rays next year. I had just been told that I had some sort of mystery bone disease in my leg, that it would get worse and I must not worry about it! To cap it all my GP said he had not heard of Paget's disease." Thank heavens for the NARPD who pointed me in the right direction.

On obtaining treatment

"All too often GPs tell their patients with Paget's: 'Its your age and you have to put up with it'."

"I am deeply appreciative of all the expert help, nursing and treatment that I have received from so many doctors and nurses, and I am extremely grateful that I live in a part of the country where diagnosis and treatment is available, I shudder to think what condition I would be in if this were not so."

"A few years after I was diagnosed I heard that a new Rheumatologist had come to Truro. I went along, had a scan, sat and talked to him. Hey presto, here was a man who told me more about Paget's in 20 minutes than the whole of my advisers had over the past 20 years!"

"The disease progressed very rapidly........in 2 months I had become virtually crippled, with every step agony........The last two days of November were spent in hospital on a drip receiving 180mg of Aredia over 48 hours. I danced out of hospital. Within the first few hours my leg had cooled down, I was free of pain and by the end of the treatment I was ready to throw my walking stick away."

On self-help and support

"What have I learned from all this? That I was unwise not to have insisted on further investigation when the condition was first suspected; not to be afraid of being aggressive in order to obtain the best possible treatment and to shun like the devil the GPs whose sole idea of curing pain is to write prescriptions for painkillers. Treating the symptoms is not enough, it needs investigation to find the cause."

"My experience has shown that we must stand up for ourselves and ask for the best possible treatment available and make people aware of our condition."

"In a country where the NHS system is rapidly revolving at all levels around nothing but 'funding' we have to be prepared to stand up for the treatment for which we have paid."

"By talking to someone, it can bring light at the end of the tunnel, and encourages sufferers to discover that there is life beyond diagnosis."