My GP was aware of the condition but suggested that I didn’t have haemochromatosis, as it “didn’t affect women” Evrah Rose, 33, from Wrexham (Wales) I was diagnosed with haemochromatosis in August 2020 after experiencing symptomsfor quite a while. I actually went private to get my tests done as I didn’t have muchluck getting tested and getting information from my NHS GP. When my results cameback, my GP was aware of the condition but suggested that I didn’t havehaemochromatosis, as it “didn’t affect women”*. There was a real lack of informationthat came with my diagnosis. Because I hadn’t heard of haemochromatosis before, I started to do my own research.That was when I found Haemochromatosis UK, which was such a massive relief. I rangtheir helpline and spoke to someone on the other end who was so helpful,knowledgeable and empathetic. It was exactly what I needed after my diagnosis. Theyexplained exactly what I needed to do next, and even helped me to arrange genetictesting for my family members. Without the support I had from Haemochromatosis UK, I wouldn’t have known whereto start. When I joined they sent me a really comprehensive information pack that toldme everything I needed to know and set me on the path to getting the right treatmentand the right medical team behind me who know all about my condition. I would recommend that anyone who thinks they might have haemochromatosis, orhas been diagnosed but feels like they haven’t been given enough information, tojoin Haemochromatosis UK and get in touch with the helpline. It’s been invaluable forme to feel heard and to get the right information. They also work really hard toeducate doctors, sending out GP packs, which is so important as I didn’t always getthe right information during my appointments. *Genetic haemochromatosis is an autosomal recessive condition, which means that men and women have anequal chance of inheriting the condition.