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
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
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
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
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
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.