The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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3rd Annual FAPGene Family/Information Day 2008

Saturday March 29th Swarkestone Sailing Club

Photographs on Page 2

This had the potential to be the best Family/Information Day yet with 42 registrations. Our list of speakers was also supplemented by a back-up system of visitors who might be persuaded to answer the call if needed. Not having this had caused a problem the previous year.

Shelly Biddles, our first speaker on an Introduction to FAP, was unable to come through a family illness, so back-up plan one was that John would up-date his own talk on the subject. Then any questions could be left for the afternoon session with Kay Neale from The Polyposis Registry at St. Marks in Harrow.

A survey of our website statistics revealed an FAP Support Group in Germany with 250 members. We then received a call from their Vice President Wolfram Nolte asking if we had a spare seat for him and so it became an International event.

We were also contacted by a family who did not have FAP but possibly Juvenille Polyposis a much rarer condition. Their two 19 year old twins were facing bowel surgery to prevent cancer. It would have been easy to say 'yes come along it will be useful to you' and boost our numbers. However we supplied a contact with a health professional for them to talk it all over beforehand and along they came.

Another extra was a chap who faced surgery for Ulcerative Colitis and was extremely interested to hear about the various bowel surgery options in the afternoon session with Sue Clarke a Consultant Colorectal Surgeon also from St Marks.

The morning session was arranged around Education and Research. After Johns welcome and introduction to FAP a brief background to our website included details of who looked at it and the reasons why. Regular notable visitors were The MD Anderson Cancer Centre in Houston, The Mount Sinai Hospital in Quebec and The Johns Hopkins Hospital in New York. In England both Cancerbackup and The National Genetics Education and Development centre in Birmingham recommended FAPGene as a valuable source of information.

An extra speaker was Dr Emma Tonkin from The University of Glamorgan who talked about her work with The National Genetics Education and Development Centre in Birmingham. This involved an educational website on genetics built around patients, carers, relatives and health professionals telling real life stories. This was rather appropriate as Mick was one of the first to provide a video interview for the project some two years ago. Do not be put off by the name Paul though. Link to web site

We returned to the announced programme when Dr Alison Metcalf from Birmingham University talked about 'The Family Talk Project'. John was first contacted by the project team to see if FAPGene could help provide families with FAP to take part. We did pass on the details to our contacts and also offered to have a series of pages on our own website to promote it. It turned out to be a good move for all concerned.
Our final speaker before lunch was back-up plan 3. Wolfram Nolte gave us an insight into what is possible with the cooperation between patient groups and health professionals. Around 5 regional groups exist in Germany and every two years they all get together at a weekend at what Wolfram described as a very nice venue to talk and listen to a variety of speakers. Also a special morning section for children only to meet and talk and socialise. This is apart from regional meetings. Their group The Family Support Polyposis Coli EV and website available from this link

Members pay an annual fee and there is a reduced rate for a family regardless of numbers. They work very closely with the medical world and also the insurance companies although they do not accept any donations from companies. We are sure we will be keeping in close touch with them in the future.

Our rather relaxed programme allowed an hour for a splendid hot buffet despite a cold one being advertised. Clare at the sailing club really did us proud.

Over an hour in the end, everyone chatted and many questions asked and answered. Also we are sure some new relationships were made amongst the families. The age spread was from late teens to 68 and photos are on here

With lunch over we came to our final speakers. Kay Neale the manager of The Polyposis Registry at St Marks who missed our day last year due to a clash of dates with The World Polyposis Day in Japan! How inconsiderate of them. Kay gave a very informative and easily understood talk on the genetics of FAP. The audience was involved by Kay asking many questions to see how much they had picked up from Johns earlier talk. We felt she was highly impressed with the answers.

Sue Clarke the Consultant Colorectal Surgeon and Assistant Director of the Polyposis Registry completed the days talks. The complexities of the two main operations for those with FAP were explained in a very understandable way. The J Pouch and a total colectomy with an ileorectal anastomosis (IRA) no longer seemed just names to us. Sue did also mention that having an ileostomy for prevention of cancer was avoided unless a last resort. This is due to the young age at which most operations for those with FAP are performed. It was also quite revealing to know that keyhole surgery is also now possible in some cases.

Apart from surgery Sue was also asked by several about Desmoid Tumors. Although quite rare in causing problems there did seem to be several ladies present who were in this category.

The speakers were presented with book tokens in appreciation and rounds of applause to the catering staff, speakers and especially John who had yet again provided a most informative day. With the weather having turned rather windy only the brave took to a ride on a rescue boat and returned in rather a damp state.


Afterwards we both felt rather exhausted for since around October we had been planning and hoping everything would eventually come together. For two senior citizens it was most rewarding. It also showed what could be done by involving patients and health professionals in similar days.

Our hope is that we can eventually attract more local speakers but we are aware that FAP is a rare condition and this might not be possible in the short term.

The wide age group showed how the gene covers all ages and perhaps it is reassuring to some of the younger patients that there are much older people affected and still living active lives. The oldest contact we have is a lady aged 75 in Devon.

We are looking at having actual members of FAPGene with the registration fee at Swarkestone also covering a years membership with an occasional newsletter.

We are still hopeful that others might be able to arrange similar events around the country but like us their main problem will be contacting patients due to confidentiality rules. Most hear of us through our website. Perhaps in the future this will change with details being passed on from genetic and medical centres.

Finally our speakers all reported positive feedback and felt it had been an enjoyable and rewarding day for everyone there. Two families are now talking to Alison about The Family Talk Project and several were able to have private conversations with Sue and Kay about their concerns with surgery and the gene in general. One family has since contacted their genetic centre to clarify a couple of points.

Any offers to be one of our future speakers would be warmly welcomed.

 

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Go to Photographs on Page 2 FAP Gene 2008 Family Day