You’re not alone – thousands across the country share their experiences
You’re not alone – thousands across the country share their experiences
Jim Jackman’s Haemochromatosis Story
Shout it from the mountains!
‘I was 59 when I was diagnosed with haemochromatosis and for the previous five years, I had been on medication for gout, pseudo gout, high cholesterol and eventually, rheumatoid arthritis.
But when my GP checked my ferrtins levels, they came back as 1400, whereas the normal level in men ranges from 30-300. The percentage transferrin saturation level was then checked and this level was also raised. Because both levels were raised, the doctor suspected that I had Haemochromatosis, which was confirmed by a genetic test. Considering I was a blood donor with over 169 donations, I would have thought that such a blood disorder would have been diagnosed earlier on in my life.
I was encouraged by my GP to inform close relatives. My two brothers only inherited one faulty gene each, so they were carriers but my sister who inherited a gene from both parents was also diagnosed with Haemochromatosis.
After diagnosis I was sent for an ultrasound on my abdomen region and a fibroscan on my liver. Fortunately, both came back fine. No damage had been done to my liver or other vital organs. The reason that no apparent damage was done was put down to the fact that I had donated so much blood over the years. I feel very lucky that I found out. My dad suffered from terrible abdomen pains all his adult life. He was only 58 when he died in 1982, after having two major operations in the space of four days on his stomach. My father always had a high colour and I believe now that he had undiagnosed Haemochromatosis. His father died in 1950, aged only 57, with heart muscle issues. I believe Haemochromatosis was an issue in his early demise.
I feel strongly that people who know that they have the condition have a moral imperative to be proactive in creating awareness of the condition. We are the lucky ones, as we know we have it and it is very treatable. Shout it from the mountain tops if you have to!
Michael Hallissy’s Story
It was a red letter day when I was diagnosed!
Michael originally trained and worked as a teacher but has been an IT consultant for over 25 years. He was diagnosed with Haemochromatosis (HH) in August 2008. He says it was a red letter day for him as he finally knew what was wrong with him! In college he played a lot of both football and hurling at his college in Cork. He would come home from school and have a nap before heading out to play another game. He thinks that maybe the iron helped him at this stage but he does remember chronic tiredness in his early twenties.
As time moved on he lived abroad. The tiredness was always there. As he moved into his thirties he felt very lethargic and chronically fatigued.He visited his GP who put him on iron tablets. After three years he started to develop soreness in his knuckles. His dad had just been diagnosed with Haemochromatosis. His sister had also been tested and had HH. Michael who is from a family of ten then decided it was time for him to be tested and was very relieved to know that there was a reason for his symptoms. His iron levels were over a thousand. He attends St James’s Hospital for venesection and has been very appreciative of the great treatment he has received from the brilliant nurses there. Michael is passionate about highlighting the importance of early diagnosis of HH.