Beki, 36, Cardiff


I’d felt pretty unwell for a while before I was diagnosed with haemochromatosis. I was feeling weak, tired, breathless and had quite a lot of joint pain. One of my blood tests came back with abnormal results, but I was told it was unlikely to be haemochromatosis. I ended up arranging some private blood tests to get my diagnosis and was quickly referred for treatment.


It was such a relief to have an explanation for how ill and tired I’d been feeling. My only reference point for haemochromatosis at the time was a friend’s parent who had been ill with it - I had no awareness of it being genetic or of younger people having it. My friend was actually the one who referred me to Haemochromatosis UK.


The information I’ve received from the charity has been excellent and there’s a really good support network out there. I’ve shared information with family members so that they can understand their blood test results and have given Haemochromatosis UK’s GP handbook to my doctor so that they can diagnose anyone with symptoms more easily. I had to push for my diagnosis and it was quite stressful.


Although finding out you have a genetic disorder can be worrying, once you know you can get treatment and start to feel better. Plus you can raise awareness and encourage family and friends to get tested and get involved. Last year for World Haemochromatosis Week, we organised for Cardiff Castle to be floodlit in red to raise awareness which was amazing!