No family connection says endo.

[Moggie]

An endo told me this week that there is no family history connection with Pagets and that it is viral - is this true and what did she mean.

Moggie x

[Hidden]

Paget's disease of bone is inherited by a great many of Paget's disease sufferers. Paget Association Members were invited to take part in a genes study instigated by Edinburgh University. Some proved positive and in some others like myself an inherited gene has not been found as yet.

[Moggie in reply to Hidden]

Thanks for that - I was absolutely floored when this endo told me there was definitely NO evidence that Paget's was inherited, do you know what she meant by it being "viral".

Moggie x

[Hidden in reply to Moggie]

There are still some uncertainties about the causes of Paget's disease but there is a general understanding that it is due to a combination of inherited and environmental influences. We know that genetic factors do play an important role. It is also thought that exposure to certain viruses and other environmental factors may influence the development of Paget's disease in an individual who is genetically predisposed. Hope that helps. The Paget's Association.

[Moggie in reply to Hidden]

Thank you very much for the explanation - the endo I saw last week totally dismissed any genetic link, a view that I will be taking up with her boss.

Moggie x

[Hidden in reply to Moggie]

You are welcome.

Genetic factors are thought to account for about 86% of the risk of developing Paget's disease. This is explained further in our booklet Paget's Disease - The Facts, available to registered members only from our website (it's free to register at paget.org.uk).

You may be interested in a video by Professor Ralston who is involved in research into Paget's disease and genetic links: "Solving the mysteries of Paget's disease" - it is on our website and on YouTube.

youtube.com/watch?v=9mogcgQ...(Not working as expected?)

[Moggie in reply to Hidden]

I have got the booklet and next time I am at the clinic I will take it with me. The endo I saw was from a different country so maybe she is not up to date with this countries research etc but that still does not excuse the fact that she gave me totally the wrong information and dismissed my objections out of hand.

There were two results on my creatine/calcium ratio test that were marked in red as abnormal and when I asked about these she told me, in a very off handed manner, "We don't take any notice of these". Will be checking this out with my GP.

Thanks once again for being so helpful.

Moggie x