session was organised to give Families and Health
Professionals the opportunity to meet each other,
talk about FAP and learn from each other how the
oddities of this genetic condition has had an
effect on their families. It was a very flexible
programme and this proved quite successful.
John welcomed everyone to the
first meeting of FAP patients outside of London
saying how pleased he was that 13 people from
6 families had come and hoped that an interesting
day was ahead of them. He also introduced Claire
Shaw and Wendy Chorley form the Derbyshire Hospitals
who later helped with the medical and technical
John's talk gave a brief history
of both The Swarkestone Bridge which overlooks
the Sailing Club and an introduction to FAP and
The bridge is reputed to be the
longest and oldest one built of stone in England
and signs of life in the area spread over 4,000
years. An impressive backdrop for the meeting.
He went on to say how surgery
was only used for those with colon cancer and
not polyps until advances were made after the
war and new techniques developed. Also an insight
into Eldon J Gardner who spotted families with
lots of bony growths and cysts although not yet
linked to digestive problems.
The Red Lion Group at St. Mark's
and The Ileostomy and Internal Pouch Support Groups
were mentioned as sources of valuable information
and support after any preventative surgery. FAP
Gene could now be seen as providing information
that is often sought after this surgery and coping
with other problems the gene is capable of throwing
This statement finished the talk
- The most important factor is if you are at risk
of FAP is to make sure you get all your checks
it may not be pleasant but you should stay in
this world longer!
John then introduced Mick Mason
as the founder of the FAP Gene website and received
a well earned round of applause for his informative
Mick then gave an idea of how
much interest there is in FAP in the academic
world and amongst health Professionals. He mentioned
the CancerBacup Genetic Cancer Booklet, the seven
Macmillan Genetic Cancer Projects, Beating Bowel
Cancers Newsletter, The Knowledge Parks in Manchester
and Newcastle and the Genetics Education Centre
in Birmingham. All proved to be of interest all
round with families from Liverpool, Sunderland
and the Midlands present.
He then moved on to how he saw
the difference in FAP to other genetic faults
which can lead to caner. Highlighting the increased
risk factor of Breast Cancer Genes (70/80%) compared
to FAP (virtually 100%). He acknowledged that
this perhaps made it harder initially for someone
with one of the Breast Cancer Genes to decide
on preventative surgery.
An interesting view was the question
of how many different people might spot something
in a patient that might point to FAP other than
the Family History or change of bowel habits.
Mick's talk included Dentists, Opticians, and
Dermatologists; most interesting was a comment
on the day that their hairdresser had passed a
remark on a son's very bumpy head.
This all led to a lively discussion
with Wendy Chorley and Claire Shaw from the Derbyshire
Hospitals helping with various technical and medical
Joining us for a leisurely
lunch, were Kay Neale from The Polyposis Registry
at St Mark's with her husband and from SLA Pharma
Chris Jordan. This again provided time for everyone
to talk to each other and discuss points from
the morning session.
After Lunch Kay gave a talk on
the History of the Registry and of FAP. To hear
of how it all started in 1924, how it had developed
and the reasons for the eventual success of colon
operations was most enlightening. The advances
in finding another gene was perhaps very relevant
to one person where the actual genetic fault has
not been found but biopsies prove he has FAP.
Kay then answered a variety of
questions about the different aspects of FAP,
including Desmoid Tumours, links to other cancers
and how complex the genetic process still is.
Chris Jordan of SLA Pharma (www.alfacapsules.com)
then took us on a science lesson which led to
a better understanding of the new Alfa Capsules.
He mentioned their area of special interest and
research is the use of ALFA as a preventative
treatment for patients who are likely to develop
bowel cancer from colon polyps. For those of us
with FAP this gives hope for future generations
that at least there might be an alternative to
such major surgery at an early age.
Afterwards we all knew a fair
bit about Fatty acids and Omega 3 and 6 and trials
which should be held later in the year. Details
of this will be on their own website and at www.polyposisregistry.org.uk
Mick thanked everyone for
their contribution during the day especially John
who had done most of the donkey work in putting
such an interesting and rewarding day together.
Also John thanked Clare of Swarkestone Sailing Club
for putting on such a buffet and drinks throughout
Afterwards John mentioned how
strange to give a talk and see people making notes.
Perhaps not so unusual for health professionals
to do but a sign of how important the information
given was seen to be. It has now been agreed to
hold another event next year and use the experience
we have gained to hopefully provide a repeat of
a successful day.
John's thoughts for March 2007
Aim for total of 35 - try to
get about 10 professionals
I think 35 is the max we can cope with using a
The room divider was good and minimised any disruption
Talk to Wendy and Claire about professionals -
At City Hospital Derby there is a new doctor training
centre - may be some interest there.
Two main speakers again but try
to get at least one from a bit closer to allow
one in morning
Finding fresh patients and family
We could do with a follow up
in Local Newspapers with a dedicated reporter.
Derby Evening Times, Leicester Mercury.
Promotion in the Nottingham and
Staffordshire newspapers and use the Nottinghamshire
and Leicestershire ia for awareness.
The Future of FAP Gene
The website has immense potential
but also need information available for non-Internet
patients. We could produce a free 6 monthly newsletter
or quarterly if enough material available. Also
we have been approached by Genetic Centres in
the North of England about the possibility of
helping organise similar days.
A personal booklet Mick has produced
needs to be printed and made available for a donation
not a set price. This could now include details
of family days and the work of FAP Gene. As well
we have thoughts of producing a diary for newly
diagnosed patients to record appointments, check-ups
Over the past 18 months over
50 FAP patients and Health Professionals have
sought non-medical advice through the website.