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| Please find below an eclectic
mixture of articles that feature Haemochromatosis and
the fight to improve the situation for those who
suffer with it. |
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Fighting the
Curse of the Celts
For those who have never heard of
Haemochromatosis it is sometimes described as the ´curse
of the Celts. When you suffer with it you know it to be
a curse for sure. The illness is essentially caused by
having defective genes that over store iron in various
parts of the body resulting in damage over time. This
illness and can affect people in so many ways and if
left undetected it can cripple you and even kill you
over time. That is why it is so important to make
changes that will make early diagnosis a matter of
routine, because if a person is diagnosed early in life
they are likely to suffer very little, or no, ill affect
from the illness.
Early treatment,
with sessions of venesection, (blood letting to remove
the excess iron in the body) can make all the difference
between a person developing the symptoms of
Haemochromatosis and a person continuing life as if they
did not actually have the defective gene at all.
The symptoms
of Haemochromatosis can include:
- Chronic
fatigue and pain;
- Cirrhosis,
Fibrosis and other liver problems;
- Abdominal /
stomach pain;
- Skin colour
change;
- Diabetes;
- Joint /
muscle pain;
- Arthritis
(often first-finger);
- Heart
irregularity, disease of the heart muscle,
cardiomyopathy;
-
Neurological disorders, mood-swings, depression and
memory loss;
- Loss of
sex-drive, Impotence, scanty menstruation in women.
It affects up to 1 in 400
people in the UK and about 1 in 10 are carriers. There
is a particularly high proportion of people with Celtic
backgrounds affected with, for example, Ireland having
the highest incidence of 1 in 83 people affected and as
many as 1 in 5 being carriers of the defective gene.
Given the very large population of people in the West
Midlands area with Irish links we feel that it is
important to make as many as possible aware of this
connection and that is why we have contacted the Harp.
Of course Haemochromatosis is
not only an issue for the Irish it is a truly ethnic
illness and there is a growing awareness of it in other
Celtic areas including Wales and Scotland. For example,
former Scottish Socialist Party MSP Rosie Kane, a
sufferer with Haemochromatosis herself, recently
presented a petition to the Scottish Parliament to try
and raise awareness, (Irish Post 5th December
2009).
In Birmingham a
Haemochromatosis sufferer has recently set up a national
internet forum at; www.just-haemochromatosis.co.uk.
Also, at long last
local sufferers have banded together to form a West
Midlands based support group, (www.HaemochromatosisWM.org.uk),
this group will hopefully become an organisation where
sufferers and their carers can support each other
face-to-face, as well as exchange experiences and ideas.
With time and effort Haemochromatosis West Midlands
Support Group could become a source of local strength to
challenge much of the ignorance on this potentially
nasty genetic illness.
Currently the
experience of many is not good with a lack of knowledge
among some medical practitioners resulting in those
newly diagnosed being asked some rather strange
questions such as ´do you drink too much and ´are your
family inbred´. Yes these questions have actually been
asked in the 21st century! While too much
alcohol may not be good for Haemochromatosis sufferers
it is in no way the cause of it and as for inbreeding I
think we can leave that one well and truly in the box
that it should belong. Many would rightly describe
comments like these as bigoted and stereotypical images
of the Irish and get a little angry.
It is the
Haemochromatosis West Midlands Support Groups intention
to stay calm while challenging such ignorance. This is
not so the ignorant are educated for their sake but so
that the afflicted are liberated from discrimination,
late diagnosis and all the negative conclusions that
this brings. Can you help with this project? Do you need
help because of Haemochromatosis?
So far much of
the interest we have generated and much of the help we
have received in the West Midlands has come from the
Irish community and those descended from people who
travelled over here in generations past.
Even those who
don’t think of themselves as Irish, because of geography
and the passing years, cannot deny their names nor the
genes from which they are made. Haemochromatosis makes
sure of that, therefore Haemochromatosis is indeed the
curse of the Celts because even if you don’t know you
are a Celt Haemochromatosis knows well who you are!
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The West
Midlands Heads North
On 6th May a quest for knowledge and
support led 10 members of the recently formed
Haemochromatosis West Midlands support group to head
north. In the first few months since we formed the group
we have been trying hard to get backing, direction and
support for the work we are trying to do.
Most of the routes we have followed
have led nowhere. However, following a letter to
Dr.
Debasis Das, a Consultant Gastroenterologist
Physician at Stepping Hill Hospital, Stockport, we
received an invite from him to go to see what he and his
team have been doing to develop a centre of excellence
for the treatment of those with Haemochromatosis in
their area. In attendance on the day was Dr Das, his
secretary Jackie, senior vensection nurse, Sue
McCormick, four other members of Dr Das´ team along with
the ten West Midlands group members and staff nurse
Carmel Maguire from the Queen Elizabeth hospital in
Birmingham, at which many of us receive treatment.
To be
honest I not think any of us, including Dr Das, quite
knew what to expect of the day. I think it is fair to
say that from our group perspective we were refreshed by
the way things went. In a very busy and sometime selfish
world Dr Das and his team put us first and made us feel
most welcome. The presentations given and the resulting
discussion made for a lively and informative day with
many details about the illness and its treatment coming
to the surface. I know for sure that one or two people
discovered details that were of direct personal use. The
discussion around how iron is absorbed in the gut was
most interesting. Understanding differences between how
this process works in Haemochromatosis sufferers, as
opposed to non-sufferers helped me see how simple and
yet how complex the overload of iron in the body really
is. While such understanding cannot provide any radical
answer by itself, knowing this helps to explain some of
the pathology involved with each of us who suffer from
so many diverse symptoms.
The
diversity of symptoms in fact formed a good amount of
the discussion and in the short time we were there we
discussed implications of Haemochromatosis from the
potential for cancer through to heart conditions and
diabetes.
One of the
most helpful issues we discussed, particularly from the
perspective of a support group with aims to augment
treatment / care delivery in its locality, were the
forthcoming realities with regard to cuts in health
service budgets and the possible implications for those
with Haemochromatosis resulting from the current
financial crisis. While the West Midlands group had
originally been drawn toward Dr Das, in part by his
ideas for centres of excellence for Haemochromatosis
treatment, our discussions with him highlighted that, in
the future, care and treatment may well become dispersed
rather than concentrated in centres of excellence, with,
for example, venesections taking place at GP surgeries
or the new Poly Clinics. While, for many, this prospect
may seem a little alarming I think, in fairness, the
general feeling on the day was that such dispersal of
treatment need not be a problem, in itself, if the
management of overall treatment and care for those with
Haemochromatosis is done by people who specialise and
really understand the illness as the diverse and complex
condition it is.
In a way,
well managed treatment of this kind may well prove to be
a better experience for many, with less trips to the
hospital, more localised venesections and yet even
better oversight of how they are really coping with the
condition. The role of technology was discussed in
relation to this kind of treatment delivery and maybe
that is something we in the Society could think about in
the future and feedback our ideas and desires to the
medical profession. How do we feel about our care and
how do we feel it could be delivered better? Is there a
place for technology to improve our connections to the
medical profession, our records and ongoing treatment
regimes?
Finally, I
would like to pass on the thanks and gratitude from all
those who went on this trip to Dr Das and all the
members of his team who greeted us so warmly. It was a
most impressive effort on your part.
I would
also like to thank staff nurse Carmel Maguire, from the
Queen Elizabeth hospital in Birmingham, who joined us on
the trip and to Dr Tripathi at the Queen Elizabeth Liver
Clinic who agreed to and facilitated her attendance on
the day. As a group I believe the experience of the day
can help us to focus our efforts in a more fruitful way
and that should prove to be a good thing.
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A confusing picture emerged following
feedback on my article in the March 2009 newsletter
about symptoms, libido and testosterone. I received
telephone calls from some very helpful people many of
whom were not too happy at the treatment they had
received and more notably at how long it had taken in
their cases to identify problems with low testosterone
and problems associated with it. Resulting from these
conversations one thing became clear to me and that was
the fundamental link between a loss of libido / low
testosterone and suffering with Haemochromatosis for
many men. Of course I had known about these links
previously but it was only through talking to these kind
people that I last comprehended the full gravity of this
link and the importance to me of getting properly
checked out. And, of course with knowledge came
questions, why had I not found out more about this
earlier? had I allowed the sensitive nature of this
topic make me hold back from seeking more information
about this? and, more importantly, why had the doctors
who treat me for Haemochromatosis failed to mention or
test for the possibility of hormonal imbalances given
that I’ve suffered with Haemochromatosis and the
symptoms of a loss of libido for many years? Thank God
for support groups!
I have since forced the issue with
my doctors and have been tested for low testosterone and
for the status of my other hormones. I have also had a
brain scan to look at my pituitary gland. Getting this
done has taken a fair bit of effort on my part and I met
resistance, in the first instance, from my doctors. I
cannot understand why I should meet resistance to
requests for this sort of test given my status. To be
quite honest all of this has made me extremely angry. I
suppose I’m getting to the same place that many of the
callers who responded to my original article have
reached over time. What is going on?! Why does it take
so much effort for the sufferers of Haemochromatosis to
get what they need?
Even after eventually getting the
results of my test, after one of them went missing for
while, I am still not greatly better informed as to what
damage has been done to my hormonal system and the be
pituitary gland and also as to what course of treatment
might be available. I have been told that my
testosterone is in mid range and I will not get
treatment because this status is considered to be
normal. Although I have been told, casually, by an
eminent doctor that he often treats Haemochromatosis
sufferers with testosterone even if they are not at the
lower range. My local doctors refuse, point blank, to
accept this and who am I to argue with them. However I
am in some confusion about these contrary opinions. Can
anyone help with that one?
Alongside that issue, results from
my brain scan showed that I have a,
´partially empty sella, (frontal lobe of the pituitary
gland) due to low prolactin levels. God know what that
means. Well I hope he does because the specialists who
treat me certainly don’t seem to. I am being asked to
wait until October before I can speak to an
endocrinologist who might know what all this means and
whether it is relevant, important or insignificant. Of
course I am not happy about this and my disquiet brings
me back to the question about why such issues seem to be
so difficult for the doctors that treat sufferers of
Haemochromatosis to sort out.
Although this
passage may seem to some to be all about me, it is not.
The whole experience that I describe above has worked as
a catalyst making me determined to do something, however
small, to bring about change for others; to do something
that will eradicate the current situation where most
people with Haemochromatosis are treated within hospital
units where Haemochromatosis is at best an add-on to
some other specialism, often not fully understood, and
at worst, and forgive me for saying this but, a bit of a
nuisance. If the statement offends some I can only
apologize and I base this statement purely on my own
experience. However, I would be very interested to know
how others feel about my sentiments.
On a positive note
as I said I’ve turned my anger toward doing something
constructive. Since going through the situation I
describe I have started to work with others to form a
local support group within the West Midlands. It is our
intention to work, where we can, to help others with
Haemochromatosis so that their experience can be,
hopefully, run smoother than our own. Overtime it would
be nice to work with others in the West Midlands, and
nationally, to bring about a situation where those with
Haemochromatosis are treated nationwide at specialist
centres with the ethos of centres of excellence so well
described by Dr Das at last years AGM. Sorry to those
who didn´t hear him speak you will just have to trust
me, when I say he knows what we need.
Such a situation
would, hopefully, remove the scenario where someone
suffering with an illness so related to a loss of
libido, low testosterone and other hormonal imbalances
has to wait so long to get some answers. Of course such,
high-minded, objectives will take much work on the part
of many of us who suffer with Haemochromatosis. I think
it is important for all of us to realise that apathy on
our part will block the routes to this end. It will
also, crucially, need the active involvement of doctors
and medical people on all levels. So to those people I
say please come forward and make yourself known to us.
In
the West Midlands as well as the behind-the-scenes work
that we will be doing to form our group and carry out
our objectives we will be holding four face-to-face
meetings a year. This year the meetings will be held in
March, June, September and December. We will be very
happy to see anybody with an interest in
Haemochromatosis come along to any of these meetings and
discuss the issues that concern them. We also need
people with ideas imagination and experience to help us
achieve our aims.
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THE MONTH of March is the time when Irish people
worldwide take pride in their bloodline and heritage and
celebrate St Patrick's Day. By Pat Holland - 10/03/10
But it is also a time when doctors are warning us to be
on our guard for the “Celtic gene” which means that
people of Irish ancestry are much more likely than any
other ethnic group to suffer from a potentially fatal
disorder called haemochromatosis. The condition means
having too much iron in the blood.
It is estimated that one in five Irish people carry this
gene and one in 86 will go on to develop
haemochromatosis.
The gene is associated with both men and women,
especially those aged over 40. Its symptoms include
excessive tiredness, male impotence, liver enlargement,
arthritis in the hand and tanning easily.
Researchers at the Mater Hospital's liver unit in
Dublin first identified the strong link between the
Celtic gene and the inherited disorder. They are unsure
about why or when the gene suddenly developed or
mutated, but believe it happened 50 generations ago,
about 900 AD.
Professor John Crowe at the hospital said the spread of
haemochromatosis "around the world is associated with
the Irish Diaspora".
He continued: "The highest frequencies outside Ireland
are found in eastern Australia, eastern United States,
in Great Britain and then to a lesser extent in
Scandinavia, northern Spain and northern Italy."
Doctors say the condition can be fatal, particularly if
too much iron builds up around the heart. But in the
overwhelming majority of cases, it is treatable - though
the earlier it is spotted, the better. They recommend
that anyone who has symptoms - such as tiredness or
arthritis in the hand – should go their doctor for a
blood test.
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