Nick, 46, London

 

I was diagnosed with haemochromatosis following a few joint aches and pains that had been dismissed as part of getting older and being busy. I did a blood test and saw that I had really high iron levels, so went to my GP for full blood counts and was diagnosed. I think I’d heard of the condition before but I didn’t know anything about it..

 

I joined Haemochromatosis UK to get more information and found the website, closed Facebook group and information pack that I received so helpful. I found the charity after doing some online searches after my diagnosis to try and understand haemochromatosis a bit more.

 

For anyone that is experiencing symptoms, I’d suggest getting your iron levels tested as soon as possible. They’re not always included in blood tests as standard so it’s important to ask for this if you want it - GPs seem to be more familiar with anaemia than haemochromatosis.  After that I’d recommend genetic testing as soon as possible, and to really push for it.

 

Learning more about haemochromatosis is really important after diagnosis. It can help you build habits to manage your condition and put you on the right path for treatment that’s right for you. Early diagnosis is the key, and I’d love GPs to be more aware of haemochromatosis so they can diagnose people earlier and they get treatment earlier.