Marie 48,

Square Peg Round Hole!

"So happy to see the recently published pamphlet 'Desmoid type fibromatosis'! For so long there has been little or no information on this rare disease. It's great to be included in a group where you can seek help and support! There are a couple of good Facebook pages on desmoids but noone seemed to officially include us until now! I was diagnosed with aggressive fibromatosis when my first born was less than a year old. The desmoid was dangerously located in my brachial plexus. I was advised to have no more children as it may have been triggered by the hormones of pregnancy. It seemed highly unlikely anyway given my age and our struggle to have a baby at all, however I'm convinced a trial on tamoxifen boosted my fertility and our miracle daughter was born in May 2010. When she was just 5 months though I had the tumour surgically removed. It's been one heck of a journey since then and I'm left with some permanent disability but I'm currently tumour free and here to tell my tale. I'm happy to talk to anyone if it helps raise awareness and understanding! "

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