Tuesday 3 February 2015

Iron Woman

Yesterday afternoon I was at Craigavon hospital for a venesection. That's simply giving a unit of blood. And as you can see from the photos it's not an experience that I particularly enjoy. Maybe you're thinking that I'm great for donating blood to help those in need of it. Well, what would you think if I told you that my blood is disposed of by burning? It does not go into the blood bank or even be used for research! So, why do I give it? Simple answer: I've inherited a condition known as haemochromatosis and the treatment for it is to give blood.


What is haemochromatosis? Haemochromatosis is very simply an iron overload. You see my body absorbs and stores too much iron. I'm an iron woman! LOL  The excess iron is stored around my joints and organs and over time that causes harm to my joints and organs. If haemochromatosis is left untreated, it can lead to conditions like arthritis, diabetes, liver disorders, heart disease. (Please understand that not everyone who has these conditions has haemochromatosis). If you want a more detailed explanation, Google haemochromatosis, or read this Haemochromatosis Society Leaflet
I like this little video as I think it gives a good overview of haemochromatosis:
What is haemochromatosis? video

How was I diagnosed? I suppose it was about 5 years ago, when I went to the doctor with joint pain and tiredness. My ankle, in particular, would swell and be sore, causing me to limp a bit sometimes. I felt I was just too young to have arthritis or such like. I was tired and thought I must be needing iron so I was taking multivitamins and iron tablets. They didn't cure my tiredness and little did I know that I was only making things worse for myself! The doctor referred me to the rheumatologist at the hospital. I was x-rayed, had blood tests and was referred to the haematologist. In the end, I was told that I had haemochromatosis. I had never heard tell of haemochromatosis before this.


What is the treatment? There is no medication to take for it. For this I am thankful as all medications can have side effects. But every fortnight I went to have a venesection. The idea is that after I give blood, my body will make up new red blood cells by drawing from the iron stored in my body around my joints and organs. At one of my first venesections the haematologist nurse said that they were hoping to get my ferritin level down to about 20. I asked what mine was and she said that it was 2000..!! It took over a year to get my ferritin level down. Now that it is down it needs to be kept down. So every 3-4 months I have simple blood tests done to determine whether or not I need a venesection. If my ferritin level goes above 50, I have to go and give more blood. It's been about 9 months since my previous venesection but my ferritin level was 98 so I needed to get rid of more iron.

What about diet? I just have to be sensible but eat a healthy diet. I am to avoid too much red meat and iron fortified cereals. I'm not to take multivitamins and iron tablets. Vitamin C helps with the absorption of iron in the body. I love fruit and pure fruit juice so I should be careful taking too much of these with meals. However, the tanins in tea help prevent the absorption of iron....just as well that I love tea!

How do I feel now? I'm delighted that I was diagnosed before any major damage was done. I'm not dancing on the rooftops but can still enjoy a good walk. I love a good walk in Peatlands Park but about 2 and half miles is my limit. The fact is, some days my joints are stiffer and sorer than others. One day I could walk with a spring in my step and another day I would limp a bit and find going down stairs difficult. You see, what damage was done cannot be undone but hopefully keeping my iron level under control will help prevent haemochromatosis causing more damage to my joints and organs. However, it is a blessing that my family are supportive and we can even enjoy a joke about it together!

Diagram showing Family Risk of inheriting Haemochromatosis

Let me make it abundantly clear, I have NOT written this blog to get your pity. I do not wish to be cushioned or treated with kid-gloves. I know my limits and try to live within them. I wrote this blog to help raise awareness of haemochromatosis. It's not only men in their 30's or women in their 50's who develop it. It is a condition which is inherited and can show itself at any age. It is also called 'The Celtic Curse' as a higher percentage of people of Celtic origin have it. It may be described as a silent-killer as the symptoms are often treated but the real cause overlooked. Remember the symptoms are not unique to haemochromatosis. If you are concerned that you may have it, talk to your doctor. Routine blood tests do not show you have it. Blood tests showing ferritin levels need to be done. If a family member suffers from it, I advise you to get checked out. You need to have the gene test done to determine if you have inherited the haemochromatosis gene.

To conclude, I wish to thank my good friend Elizabeth Wallace for bringing me for my venesection and for taking the above photos for me.

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