You’re not alone – thousands across the country share their experiences

You’re not alone – thousands across the country share their experiences

Conchúr Ó Brolcháin

I’m in a place where I feel healthy and energetic

My own personal haemochromatosis journey has been an interesting one. My father was diagnosed with Haemochromatosis in 2002 after bouts of severe fatigue that actually culminated in him being diagnosed with terminal cancer. His passing was extremely sad and traumatic for us all, but it did provide a catalyst for close family members to be tested for iron overload. In the months following his death all of his brothers were found to be haemochromatosis sufferers, a rarity apparently, that has led us all on a journey of comparing and contrasting phlebotomies and iron ferritin levels for the best part of 15 years.

Despite the minor inconvenience of frequent phlebotomies and the occasional anxiety about symptoms that may affect me in later life. I believe wholeheartedly that having haemochromatosis has helped me to develop a deeper consciousness about health, wellbeing and diet. My most recent wellbeing adventure has culminated in a decision to become vegan. If it was the diagnosis of haemochromatosis that sparked my search for a healthy lifestyle and diet, it was various Netflix animal welfare and environmental documentaries that have pushed me over the edge into a plant based eating lifestyle. Not only has my cholesterol dropped to 4 but in light of the Irish Haemochromatosis Association’s information booklet, detailing the difference between haem and nonhaem food sources along with a thorough description of inhibitor foods, it appears to be a positive health decision for me. Although I will need to continue to stay informed about the Celtic curse and also to have iron ferritin levels monitored regularly, I can say with hand on heart that having ‘the bloods’ under control, keeping alcohol consumption to a minimum (except when the Galway hurlers won the allIreland) and eating healthily has lead me to a place where I feel happy, energetic and healthy.

Jarlath Hughes

Early diagnosis of haemochromatosis is crucial

When I was about 40, I began to feel tired, lethargic and had low libido. I went to the doctor but as the GP didn’t know the cause of my problems, I stopped attending the surgery.  

As the years went by, things got worse. I was getting headaches, loss of concentration and poor memory. This made it very difficult to do my job and it was very stressful. Every night I went to bed exhausted and woke up just as tired after 8 hours sleep.

Something had to be done about this and I went back again to the GP. I insisted that he did a ‘Wellman” full medical examination. One of the blood tests was Serum Ferritin. My level was 2580ng where it should have been under 300ng. The Transferrin Saturation was 98% instead of 45-50%.  I was referred to a gastroenterologist who organised a genetic test, the results of which confirmed a diagnosis of haemochromatosis. I commenced weekly venesections for nine months until my level was normal. This was a slow process as it was often difficult to get blood from my veins.

I was 57 when I was diagnosed in 2007. I am now 68 and my life has greatly improved. I no longer have headaches or dizziness.

My wife is a carrier for Haemochromatosis which means that she has one mutated gene. We have 3 children, one son doesn’t have Haemochromatosis, our daughter is a carrier, our other son was diagnosed when he was 23. He has twice yearly phlebotomy but because he was diagnosed early he has none of the symptoms that I had. This is why I strongly believe that early diagnosis is so important.

John O’Brien from Dublin

How a dive on the barrier reef uncovered a HH diagnosis

In 2014, my wife and I had planned a visit to our daughter, Eimear, who lives in Brisbane, Australia. I decided that a chance to scuba dive at the Great Barrier Reef would be too good an opportunity to pass up. So I applied to get my PADI diving certification. The diving instructor informed me that because of my age (56) and a pre–existing back condition I would require a doctor’s sign off on the training. As part of the medical examination my GP asked the practice nurse to take some blood samples. When the nurse was taking the blood samples she said that she would also get me tested for Haemochromatosis. I had never heard of Haemochromatosis and the nurse was handed a copy of the Irish Haemochromatosis Association (IHA) information leaflet. On reading the information on the leaflet and later on the IHA website it occurred to me that the diagnosis explained the fatigue and also a heart irregularity.

The blood test results came back and it was confirmed that I had Haemochromatosis with a Ferritin level of 1000. Once the diagnosis was confirmed an appointment was made for the Venesection Clinic in St James’s Hospital where I met the resident nurse, the marvellous Liz, coincidentally an avid scuba diver. A programme of venesections was set up and my stored iron (Ferritin) levels were restored to a safe level. In addition to the venesection treatment I had my liver function checked and also had my joints scanned, luckily there didn’t seem to be any deterioration.

I ensure I maintain a healthy diet. Having recently retired, I hill-walk every week and I’m planning another dive in Australia shortly. My energy levels have improved hugely.