The Beginning...

When I was officially diagnosed with Aggressive Fibromatosis, I, of course, went straight to the internet to research this disease and gather information for both mine and my family's benefit. It was then I hit a stumbling block, there was and still appears to be a huge lack of information for this disease, although at some base level this would almost be expected with the disease being as rare as it is. My next thought was to look up a UK foundation dedicated to Aggressive Fibromatosis, again I came up with nothing. It is for these reasons that I will now dedicate my time and effort into creating this page, I will aim to fill in the blanks that newly diagnosed sufferers are looking for and will also aim to keep abreast of recent techniques and write up articles on these techniques for you to read. I hope you have now stumbled across what I was searching for in the beginning.

    General Desmoid Tumour Survey

Your Stories...

I would love to be able to upload your stories about being diagnosed with Aggressive Fibromatosis, if you would like your story to be uploaded to the site please email it to:
[email protected]