Talking about cancer
posted by FAPHusband
28 February 2017

Familial Adenomatous Polyposis

Last reply: 3 months ago

Hi I'm new to the forum. My husband was diagnosed with FAP over 13 years ago and had an immediate preventative subtotal colonectomy with IRA. Wondering has anyone out there also been diagnosed with this very rare genetic condition and if so, if they'd like to share?

4 comments

Comments

commented by Irish Cancer Society
23 March 2017

3 years ago
Hi there, I see you haven’t had a response on the online community. If you want to have a chat to a nurse you can call the Cancer Nurseline 1800 200 700 Mon- Fri 10 – 4pm Cancer Nurse
commented by FAPHusband
28 March 2017

3 years ago

Thanks for the reply. We have had the very lonely and isolating experience that FAP is a condition with which very few in Ireland have any experience, including the Irish Cancer Society when last we spoke to you in 2014. We have since looked to the UK and have been receiving specialist support and surveillance in London through the HSE's Cross Boarder Directive. If there is anyone the Cancer Society knows of who has been affected by this very rare genetic condition, we would be very happy to share our experiences with them. There is little or no support for FAP in Ireland but we are interested in establishing some sort of FAP support network here.

commented by Irish Cancer Society
16 May 2017

3 years ago

Hi there, I hope the information below will be of use to you. Kind regards

Established in 2004, the FAP Gene Support Group provides support, information and education to those affected by Familial Adenomatous Polyposis and Gardner's Syndrome (FAP), and aims to raise awareness of the condition. The Group also holds an annual, informal chat day. FAP Gene Support Group can be contacted on Tel: 01 664 566101 Email: enquiries@fapgene.com

PolyPeople Contact via website www.polypeople.net PolyPeople provides support and information to those affected by Familial Adenomatous Polyposis Gardner's Syndrome (FAP) plus Peutz Jegher's Syndrome, Juvenile Polyposis and MYH (Mut Y Homolog). The group also helps to raise funds for St. Mark's Hospital Polyposis Registry. Group details last updated October 2016

commented by CG_Moore
16 November 2020

3 months ago

Hi there,

I'm seeing this incredibly late but I was diagnosed with FAP at 11 back in 2001. I've never come across anyone else that had FAP (other than my grandad and my mam). Happy to help out with a support group in any way I can. I've written a book about my experiences with FAP so would be useful to be able to direct people to a support group. Thanks. Hope you're keeping well and safe. :)

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