Who can be effected?
First
of all it is a condition which mainly the Caucasian population can
inherit and there is some evidence that it is generally associated with
people of Celtic origin, especially Irish folks. It used to be thought
that this was a masculine complaint,
but now it has been shown that women are just as vulnerable in
inheriting genetic haemochromatosis as
men. It is identified in the populations of most European countries, as
well as Australia, United States Of America and Canada.
All of these countries have strong
voluntary support organisations.
How can I find
out?
Initially, you
will be given blood tests to give a provisional indication of your
likelihood of having inherited this condition. These tests will
probably be as follows:
Serum Ferritin...this
gives an indication of the stored iron levels in your body and should
have upper limits of 300 in men and 200 in women ( units have been
omitted ).Once diagnosed they will aim to keep your ferritin below 50 However Serum Ferritin might be within the normal range
and can be raised due to other reasons.
Transferrin Saturation...this is usually a
more reliable indication and is simply the ratio between your Serum
Iron level and your Total Iron Binding Capacity (
TIBC). It is expressed as a percentage and should not exceed 62%
in men and 55% in women. An average reading is about 30%.
Genetic testing... Luckily in
the last few years the Americans have identified the defective gene and
you can now be tested for it.The most
common mutant gene is known as the C282Y gene, but it is not the only
one. This test can predict your susceptibility or otherwise with a fair
degree of accuracy.
Lastly...there is
the liver
biopsy where your consultant will remove a small sample of your liver and he will be able to estimate
the amount of iron accumulated in the liver and also assess any damage
incurred by your liver. This is an invasive procedure and is not
carried out so often now that the gene test is readily available.
Is there treatment available?
Yes,
there is, but not in tablet form at present. You will have to attend
for blood letting ( venesection/phlebotomy
) probably once every week, for up to two years when they will remove a
unit of blood...about a pint each time. This makes your body use up its
stored iron to replace the red blood cells removed. This is the only
treatment currently available; but it does work...believe me, I know.
Who are you?
I am just a guy who was
diagnosed late in life and tries to help our national society to spread
the word. I am 66 and am a retired teacher and still lead a normal life
and travel frequently. I just consider that this is an important
message to get across to people.
Where can I get
information and support?
Me of course on: alan.mannering@btopenworld.com
OR
Janet Fernau,
British Haemochromatosis
Society,
Barnet...London.
Tel: 020 8449 1363
E.Mail: ghsoc@compuserve.com
Web:
http://www.ghsoc.org
Revised: 17th February 2005:
Published by: Alan Mannering,
Sheldon, Birmingham and
assisted by dragonfoundry.com
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