Familial Adenomatous Polyposis
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?
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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.
I only see this forum now. I would be very interested in hearing about the specialist support and surveillance in London as I am not happy with the support available to my family here in Ireland.
My sister-in-law, my mother-in-law, my husband and my youngest daughter were all diagnosed with FAP since 2000. My daughter was only a little tot at the of her diagnosis. She was also subsequently diagnosed with Gardner's syndrome and has had multiple operations. She had a temporary colostomy bag for around 18 months when she was 16. She has since had an internal pouch operation.
We have sadly not had good experience with the Irish health service on this matter. After our latest experience we have lost all confidence in the consultant that has been looking after husband and daughter for some years. Despite my best efforts I have not been able to find out where we should now try to get any support and surveillance.
Any information you would be willing to share would be greatly appreciated.
Thank you.
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
Hello there,
I am looking for information about the FAP gene and only see this now.
I tried to log on to the above webpage, but it doesn't exist. I also tried to email the support group but that doesn't exist either.
Any advice please.
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. :)
Hi I and many if my Family members. Have PJS we habe found Dr Hogan in St Vincent's to be very supportive and he has set up a regular screening programs
