Hi all I was diagnosed with FAP in 2003 which has resulted in years of various surgeries, clinical trials and crap times. I now have a permanent ileostomy, no rectum, 2 desmoid tumours and extensive duodenal and ampulla disease....awaiting multiple surgeries. Although I have not yet been diagnosed with Cancer my condition means I'm predisposed to growing adenomas which turn to cancer, these are what I've got in my duodenum and ampulla.Im looking at time of work and need to know if I can get any support. I have just got on with it for years as FAP not that common and people dont understand but now really struggling....
Hi Betsy
Welcome to the online community and I'm sure that you don't want to be here with us, very people do, but now that you've found us and reached out to us, I hope that we can be of some help to you and possibly signpost you to places that you can get support.
I must admit that 16 years since first diagnosed and multiple surgery to date without knowing what the future holds must be sole destroying and a constant worry.
I would like to invite you to send your story with as much information as you have to our
Ask an Information and Support Adviser Group page and ask them about support regarding employment rights and other support you think you might need.
Over the last year plus numerous discussion threads have been started and these may be of interest to you to see what other members have been saying.
If you do a search on this site by typing in FAP this should open up all the discussions.
We have various groups that you could join and if you let me some more information about yourself I try and point in the direction of some suitable groups, I can, however, at this time point you to our Ileostomy, colostomy, urostomy and any other stoma support Group where you can me others with a stoma.
Our telephone support line on 0808 808 0000 is open 7 days a week between 8 am and 8 pm and the friendly team are available to answer questions on many topics and transfer to a team of experts who can advise on anything financial and energy, work and much more, on the same number you can speak to our specialist nurses or you can ask them questions on our Ask a Nurse page.
We are able to give you lots of information and support by contacting our telephone team, our experts on many things, our nurses and of course the friendly members of the many groups are always available to give you their help and support with lots of experiences, we just need to get you settled into the most appropriate groups. But in the first instance pop into Ask an Information and Support Adviser group page and ask away, please give 2 working days to reply.
Come back to us to enable us to find and settle you into some groups
Ian
By clicking on any of the green text above will open up new pages for you.
