I work in the healthcare system and understand it really well – but I still found it extremely difficult to get the right treatment and support Julie Brown, 42, from Ballymena (Northern Ireland) I was diagnosed with haemochromatosis in June 2021. In 2020 I had unfortunatelyhad COVID-19 twice, and thought that the symptoms I was experiencing - such asbrain fog, joint pain and muscle pain - were part of ‘long Covid’. So to get thediagnosis was a huge surprise as there’s no family history that any of us are aware of. The process of being diagnosed was far from straightforward and left me with a lotof uncertainty. At one point I wasn’t even sure if I had haemochromatosis as I hadsome conflicting advice on whether women got the condition or were carriers. I didn’tget much more information after my diagnosis either, which was extremely worrying. I found Haemochromatosis UK online and got in touch with their helpline. Theyanswered all of my questions, told me what I needed to do next and just really helpedto reassure me about the condition, as I’d had so much conflicting information. Thishelped me to ask the right questions from my medical team and to be able to makelifestyle changes to help manage my condition. They even sent me age-appropriatebooks for my kids to help them to understand the condition. We also used the charity’s genetic testing service for family members, and as part ofthis we were able to be referred to a genetic counselling practitioner via video call.This service isn’t available in Northern Ireland via the NHS but was so useful for us asa family. It really helped us to understand the results, ask questions and understandwhat it means to have this diagnosis. Without the support of the helpline, genetic counselling and the information givenby Haemochromatosis UK I wouldn’t have been able to advocate for myself like thisor get all of the information I needed to support me. I work in the healthcare systemand understand it really well – but I still found it extremely difficult to get the righttreatment and support, so I genuinely worry about what happens to people who haveless awareness and don’t have the support of a charity like Haemochromatosis UK.Their helpline has been an absolute lifesaver for me.