Stephen, 46 from West Sussex

I fell ill last year with - what I thought was - a sickness bug or food poisoning that left me bedridden and ill for a number of weeks. I went to the doctors and had a lot of tests done, including a test on my ferritin levels. The results came back really high and after an extremely long wait, I finally saw a specialist and was diagnosed with genetic haemochromatosis. 

I’d never heard of it before, and didn’t know anyone who had been diagnosed with it at first but I do now wonder if some of my relatives have had this but never been diagnosed. With hindsight, a lot of things fell into place for me, like the hypertension, gout and tiredness that I’d been experiencing for quite a few years. I’d just made adjustments to my life rather than thinking they were anything to do with my overall health.

I’ve started having venesection treatments, and I’m currently working with my medical team to try and get the frequency right. I do tend to worry about my health, so this diagnosis has been worrying for me and has affected my mood and made me feel anxious which is hard. I’ve taken some time off work while I deal with my diagnosis, and my work have been really supportive with this.

Something I personally found invaluable was speaking to Haemochromatosis UK’s genetic counselling service. Having someone with awareness of the condition, as well as the necessary support tools has been fantastic. It’s really helped me to find balance and put my experience into perspective. I would recommend that everyone does this if they can, and I’ve since sought out a referral to an NHS genetic counsellor too.

For anyone with a diagnosis, I’d recommend to try not to worry too much about what you read online, everyone responds differently to treatment and symptoms. There isn’t one size fits all. Talk to the professionals, take their consultations and guidance on board as they want to help you.