I was diagnosed with type 2 diabetes more than 10 years ago and a test for haemochromatosis was one of the initial tests that the GP carried out. It showed up quickly that I had seriously high ferritin levels. [Ferritin is a protein that stores iron in the body cells for use at a later stage. It is one of the tests used to confirm a diagnosis of haemochromatosis.]
I was not in good health at the time. I had joint pains, I was cranky, tired and generally out of sorts. I realised that if I hadn’t been diagnosed with haemochromatosis at that time, I’d be a dead man now.
I immediately began an aggressive treatment programme for the condition. In fact, I had over 40 phlebotomies – which are a form of prescribed blood donation – to lower the amount of iron in my body. It took almost weekly visits to the hospital over three years to bring the levels of iron in my blood under control. I went in for the phlebotomies at about 7.30am before I went into work.
You do feel a little debilitated after a phlebotomy and I experienced bouts of tiredness but it was a fantastic moment when the haemochromatosis was under control. That was in 2003 and since then, I have only to go two or three times a year for a phlebotomy to keep the condition under control. After each treatment, I sit and rest for a while.
I feel extraordinarily lucky to have been diagnosed when I was. Because, once you’ve had a diagnosis of haemochromatosis, the treatment is straightforward. My liver was damaged somewhat but it seems to be okay now. The problem is that many GPs still don’t seem to consider testing for haemochromatosis early enough and people can become very ill and even die from complications of the condition if not diagnosed early enough.
Haemochromatosis is a genetic condition. I am the eldest of 10 and my sister has been diagnosed with it too. My son will get tested for it in due course. Some people are fearful of being tested because there is a potential extra loading on health and life insurances.
This is unreasonable, in my view. In fact, I chaired a Department of Health and Children working group on haemochromatosis (2006) which recommended that younger members in particular who are in treatment and have no significant health risks should not be unfairly loaded when seeking insurance cover. [Since that time, most life assurance companies understand haemochromatosis better and don’t load policies of those whose condition is under control and without complications.]
The Irish Haemochromatosis Society, which I am involved with, does its best to put leaflets on the condition in GP surgeries and pharmacies but we'd like to see a greater effort made by the HSE to publicise the condition.
In my case, the diagnosis of haemochromatosis has meant that I have averted serious liver disease and possible heart failure. I have also averted a catastrophic decline in my quality of life. In fact, I’ve a lot more energy now than during that period of time when I was diagnosed and treated – even though I’m 10 years older.