Husband to Steph
First attended Information Day in 2008
Found it helpful talking to those affected
Knows how helpful PolyPeople can be
Keen to grow the voluntary base
Until I met Steph I’d never heard of FAP, polyposis or even polyps! Soon after we met I began a rapid learning journey, starting to understand the details of her condition and the impact it has had and will have on her daily life.
As part of that journey of discovery, I first attended the Polyposis Registry Information Day at St Mark’s Hospital back in 2008 and I’ve been every year since except one, when I was unwell. For me it’s a chance to hear from the experts about ‘all things polyposis’, which I find so helpful. I’ll also never forget my attempt to conduct an imaginary endoscopy using the St Mark’s tuition machine some years ago!
"My respect for the expert staff who undertake this important task grew immeasurably on that Information Day!"
I’ve also found it helpful to meet family and partners of those with an FAP diagnosis to talk about our shared experiences. That’s why a few years ago I agreed to facilitate a ‘PolyPartners’ session, which usually runs at the Information Day. If you ever wonder whether the Information Day is worth a day of your time, don’t wonder any more – just sign up and come
I try to stay up to date with FAP information, and as we travel about in daily life I have learnt to consider practical issues that are important to Steph, such as the location and layout/privacy of toilet facilities, (particularly in public places), the menus available in restaurants, or making up her St. Mark’s E-mix each day!
When Steph volunteered to become involved in PolyPeople, (initially as a 1:1 supporter, and subsequently as Secretary), I was happy to contribute in any way I could as well, and agreed to join the committee. It’s a great group of people who are really committed to providing support and information to those affected by Polyposis, and I knew from her how helpful she had found it to chat to someone in advance of her surgery.
"As well as organising the PolyPeople activities and resources, this involvement gives another opportunity to meet and provide mutual support to those affected by such a rare group of conditions."
It would be great if there were more of us, so please do consider volunteering to be involved: perhaps it could be your conversation with someone who has recently received a diagnosis that helps them at the start of their journey.