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?
Familial Adenomatous Polyposis
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.
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: firstname.lastname@example.org
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