Evrah Rose, 33, from Wrexham (Wales)

I was diagnosed with haemochromatosis in August 2020 after experiencing symptoms
for quite a while. I actually went private to get my tests done as I didn’t have much
luck getting tested and getting information from my NHS GP. When my results came
back, my GP was aware of the condition but suggested that I didn’t have
haemochromatosis, as it “didn’t affect women”*. There was a real lack of information
that 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 rang
their 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. They
explained exactly what I needed to do next, and even helped me to arrange genetic
testing for my family members.

Without the support I had from Haemochromatosis UK, I wouldn’t have known where
to start. When I joined they sent me a really comprehensive information pack that told
me everything I needed to know and set me on the path to getting the right treatment
and the right medical team behind me who know all about my condition.

I would recommend that anyone who thinks they might have haemochromatosis, or
has been diagnosed but feels like they haven’t been given enough information, to
join Haemochromatosis UK and get in touch with the helpline. It’s been invaluable for
me to feel heard and to get the right information. They also work really hard to
educate doctors, sending out GP packs, which is so important as I didn’t always get
the right information during my appointments.

*Genetic haemochromatosis is an autosomal recessive condition, which means that men and women have an
equal chance of inheriting the condition.