Julie Brown, 42, from Ballymena (Northern Ireland)

I was diagnosed with haemochromatosis in June 2021. In 2020 I had unfortunately
had COVID-19 twice, and thought that the symptoms I was experiencing - such as
brain fog, joint pain and muscle pain - were part of ‘long Covid’. So to get the
diagnosis 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 lot
of uncertainty. At one point I wasn’t even sure if I had haemochromatosis as I had
some conflicting advice on whether women got the condition or were carriers. I didn’t
get much more information after my diagnosis either, which was extremely worrying.

I found Haemochromatosis UK online and got in touch with their helpline. They
answered all of my questions, told me what I needed to do next and just really helped
to reassure me about the condition, as I’d had so much conflicting information. This
helped me to ask the right questions from my medical team and to be able to make
lifestyle changes to help manage my condition. They even sent me age-appropriate
books 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 of
this 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 as
a family. It really helped us to understand the results, ask questions and understand
what it means to have this diagnosis.

Without the support of the helpline, genetic counselling and the information given
by Haemochromatosis UK I wouldn’t have been able to advocate for myself like this
or get all of the information I needed to support me. 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, so I genuinely worry about what happens to people who have
less awareness and don’t have the support of a charity like Haemochromatosis UK.
Their helpline has been an absolute lifesaver for me.