When we first got married in 1971
everything was fine. We had no idea that there was
an inherited disease in our family. We had two children
and they were quite young (2 or 3 years old) when
we got a letter from St Marks hospital to ask if Derek
would go to be screened for polyps in his large bowel.
Derek had a younger brother who
also went for screening at the same time. He was found
to have dangerous polyps and a total colectomy was
arranged. Derek was clear at this time and for several
Derek had his colectomy operation
in 1981 (at the age of 35). The emotions that we went
through at this time were very mixed. We were angry
with Derek's parents who had not seen the need to
warn us about this disease even though they had been
told that their children should be checked. Derek
felt incredibly guilty that he had brought two innocent
children into the world who might have to go through
the same agonizing as he was going through and we
felt so helpless at what seemed a real possibility
of it spreading relentlessly through the digestive
system. We also felt extremely lonely in that no-one
understood or had even heard about this disease. We
had the added concern in our family that Derek's Mum
(who passed the disease to im) died of duodenal cancer
and then his brother also died in the same way.
As a family we got involved with
the Royal Victoria Infirmary, Newcastle when some
funding was made available to look into our condition.
We had an eye examination, which was concentrated
on looking for black areas on the back of the eyes.
They were also talking about the density of the jaw
bone, but cannot remember having an x-ray. At the
same time blood was taken to obtain a genetic DNA
fingerprint. Derek's dad also gave blood as by this
time his mum and younger brother had both passed away.
They both had, had total colectomies and were being
checked on a regular basis, but only sigmoidoscopy
Both the eye examination and the
fingerprint found that one of our children did not
carry the gene. They were in their early teens at
The child who had inherited the FAP
gene had yearly sigmoidoscopies and by the age of
eighteen needed a total colectomy followed by a pouch
operation ten years later.
After the operation Derek was diagnosed
to have pernicious anaemia due to vitamin B12 deficiency
for which he is taking the following - A 5mg tablet
of folic acid and an injection of Hydroxocobalamin
1000MCG/1ML (form of vitamin B12). Originally this
injection was monthly but now it's been changed to
three monthly. Derek tends to get tired towards the
end of the three monthly period.
We are very interested in meeting
and talking to anyone with the same condition. We
feel it would be really helpful to begin a support/self
Over the last few years we have talked
to our local genetic councillors (based in Newcastle)
and have created leaflets advertising the fact that
we would like to set up such a group, but we have
had no response to the leaflets even though they were
put in all the local hospitals and doctors surgeries.
We are therefore extremely excited
to be able to make contact with Mick through his website.
He has done what we would have really liked to do
but were not computer literate enough to start our
own website. We still haven't the skills required
so must thank Mick for all his hard work in setting
all this up and enabling us to tell our story so far.
Mick also suggested that we could
have an email address where you could contact us if
you would like to talk about anything or would like
to think about setting up some sort of meeting in
the North of England.
We look forward to hearing from you
on the following email address