This
website contains facts, information and personal experiences
of haemochromatosis
Hi, my name is Alan
Mannering, I come from
Birmingham in the West Midlands of the UK and I have haemochromatosis. Haemochromatosis
is my silent illness. You haven't heard of it? Well not many
people have. I was diagnosed quite accidentally when I was
55.
This is the most common of all the genetic conditions;
it is even more common than cystic fibrosis or muscular
dystrophy. The incidence is now reckoned to be
between 1 in 200 to 300 with 1 person in
10 being carriers of the mutant gene. It is a
condition in which the body does not
metabolise iron, which then accumulates over the
years in various organs. Notably, it is in the liver and
pancreas etc. My own stored iron level was
about 2000% too high; this excess having accumulated over 55
years. I was diagnosed purely by chance after a cardiac
check at my local hospital. The heart specialist noticed a
bronze colouring on my body,
which alerted him to the possibility of me having the
condition........this is
sometimes called bronze diabetes
Click the link below to get to see the tv footage of me and Professor Porter of University College London.
If this fails- do a Google search on NHS Choices Videos Haemochrmatosis.
Hi! It occurred to me recently that this website has been going for over 12 years now and that it is, perhaps time to review its purpose and usefulness. Let me say that, from the start, I built this site with the sole purpose of providing assistance to many sufferers who were desperate for help in the form of information and guidance which I have been able to give through the enquiries that I have received from many sufferers over the years. This started in the days when there was very little information about haemochromatosis on the web - or any other place for that matter! I strove to provide what information I could with articles, letters to professionals, radio shows and recently by appearing in a NHS sponsored video featuring a professional and me acting as the case study. Lastly I wrote and published a little book called Any Old Iron which was based on my own experiences.The result of this has been an acute increase in the awareness of our illness and far more patients diagnosed now than when I was first diagnosed. Back then, there was no genetic test to use as a diagnostic test. Of course all of this was not down solely to me nor my website but is a culmination of many efforts, especially our national society and groups like my local Birmingham based one - West Midlands Support Group.
After all this time you may wonder how I am coping with my health problem especially as I am now 73 and well into my retirement.The general outlook is good and my health remains stable and lacks many of the symptoms of haemochromatosis such as diabetes and arthritis, albeit that I have osteoporosis. My iron overload condition is still well controlled and my serum ferritin levels are well within normal accepted limits and my liver function tests remain at acceptable levels.
I am very lucky to have remained so stable over the years. Furthermore I have not required a venesection for more than 4 years which is always good news for me. You probably think that there must be a down side to my health and of course there is and it is macular degeneration of the eyes which results in near blindness. I was told a long time ago, years ago in fact that I had the opening symptoms of this complaint but it has now occured quickly; since last Chritsmas (2010) in fact and I have already lost most of my central vision and cannot read by normal means and I cannot count the change in my hand. One of my greatest pleasures has always been reading and this was lost to me. In America they are currently researching a link between haemochromatosis and macular degeneration but to be honest the jury is still out on this question. I recently saw an advertisment for a Kindle electronic book and this seemed to be the answer to my problem and so I bought one and the result was miraculous as I can download books (at a fraction of thier cost) and then enlarge the font to a size I can read and so my reading activities have resumed. I do hope that all of you haemochromatosis sufferers out there are being as fortunate as me in your health and fitness and I pray that we shall soon have better treatments available.
Meanwhile still feel free to write to me on any points you wish about our wretched condition as with a white keyboard with black letters I am still able to use my computer.
Best wishes
Alan
What are the symptoms?
Chronic fatigue, lethargy and weakness
Abdominal and stomach pains
Arthritis, especially of knuckles and first finger
joint
Late
onset diabetes (non insulin dependent - type 2)
Cirrhosis and Fibrosis and other liver
problems...abnormal function tests
Impotence (sexual dysfunction) in men
and scanty menstruation in women
Cardiomyopathy... disease of heart muscle
Neurological disorders... moods... depression... memory loss
Osteoporosis... brittle bone disease in men and women
Bronzed skin colouration...
in effect a permanent tan
The Iron Disorders InstituteGuide to Hemochromatosis
This book has been my bible and reference book for many years and I have never found another book that is so clearly written and so well structured as it deals with many problems through case studies and has a comprehensive index. This is the only book once offere for sale by the British Society. It is authoritative and well written and I would not be without a copy.
The Hemochromatosis Cookbook I have always enjoyed cooking but I was a little bit phased when I realized that I would have to cook differently to limit my iron intake. Cheryl Garrison's book, has been a great help to me in keeping me focused on this dietry requirement. Cheryl's husband suffers from our complaint and Cheryl whom I have known for several years, has worked intensely to find tasty and interesting low iron dishes. She is rather an authority on G.H. and ran a lively forum for the Iron Institute of America.
Who can be affected?
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 are in nanograms per mililitre ).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. Each
treatment removes about 250 mg of iron. This is the only
treatment currently available; but it does work...believe
me, I know.
Who Are You, Alan Mannering?
I am just a guy
who was diagnosed late in life and tries to help our
national society to spread the word. I am 71 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.
For any of you who are members of a society or club where you require speakers, please click here for details of my talk which is called'Any Old Iron'. Details of several other public speakers covering a wide range of subjects are also available through the site www.diannemannering.co.uk
Have you thought about buying a Kindle?
As far as the Kindle is concerned..... don't be put off because it is a new-fangled piece of technology or because 'it isn't the same as holding a book' ! Of course its new technology and of course it isn't like holding a book, but most people reading this are computer literate and the Kindle is basically a compact computer, so if you can use the machine you're reading this on, then you'll easily cope with a Kindle.The Kindle is smaller and lighter than a book, very neat and portable in fact. Click on the picture on the right and read more about them, I do most thoroughly recommend them especially if your eyes are giving you trouble reading. As you can see from the photo of me on the left, you can use it outside in sunlight. You know how housewives say that their Aga is 'the friend in the kitchen', well, my Kindle is 'my friend in my pocket'.
Best wishes to you all
Alan
Have you read my book - Any Old Iron?
The book tells of my personal experience of Haemochromatosis
Please click on the book image for more details about how I came to write it and how you can obtain a copy
Frequently Asked Questions
lots and lots of questions that you'll want to ask have already been asked - here you'll find the answers and also, a glossary of words that you'll come across in connection with haemochromatosis
