Sarah, 44, Chorley

I was a teacher, so I was used to being on the go and sometimes feeling tired. However over summer 2018, I started to feel tired all the time. We’d recently relocated so I put it down to that, as well as being busy. However, I started to really struggle so I went to the doctor and got some tests done which didn’t show anything - I later found out they hadn’t done the blood test that would show haemochromatosis.

It was a chance change of GP and a new doctor that led to my diagnosis. They took the time to map out my symptoms and experiences to work out what was happening. One of the things that we realised was that I’d always been a blood donor - just because I’d felt it was a good thing to do - but I’d missed some sessions, which turned out to be around the time my symptoms started.

After some different blood tests, I had my diagnosis but that was about it, I didn’t get a lot of other information. To be honest after 18 months I was just relieved to have a diagnosis so that I could do something about the way I felt. I was then referred to specialists and started a combination of venesection and blood donation to manage my iron levels.

I joined Haemochromatosis UK after finding it online when I was looking for information. I’ve found it really helpful, especially when it comes to advocating for my own health - which I think you need to be able to do to get the right treatment for yourself sometimes - as well as get information that I haven’t really had from anywhere else. It’s been a fantastic reference.

It turns out that there’s some family history of the condition, but I wasn’t aware. I plan on getting my children tested through Haemochromatosis UK when they’re a little older as I think it’s a great service.