Richard Charles, 65, from Bristol


I was diagnosed with diabetes in 2015. My doctor had some concerns about my liver
after my diabetes diagnosis and sent me off for blood tests. When these came back,
I was told I had haemochromatosis. I had never heard of the condition before and
was surprised that so little information was given to me. After doing a little bit of
research, some of my health issues - like my hip replacements at a young age, and
my diabetes - started to fall into place.


My adult children were given letters to take to their GP to arrange blood tests for
haemochromatosis, but this proved easier said than done. Both of my children found
it very difficult to access testing through their GP. My wife, Karen, also discovered
that she was a carrier of haemochromatosis, which made it even more important for
our children to get tested.


I had joined Haemochromatosis UK after my diagnosis as I wanted to find out more
about the condition and help others with it too. Through my membership, I became
aware that the charity offered subsidised genetic testing for friends and family. We
ordered tests for our relatives. They came really quickly and the results were back in
weeks. The service was excellent.


You’re offered a follow-up call as part of the testing service, which is extremely
helpful. When you get your diagnosis you have so many questions that your GP can’t
always answer. The people at the charity we all spoke to were extremely helpful and
knowledgeable. It’s also helped us to be able to inform our wider family about their
options to try and help them avoid the problems I had.


The results went through to the GP as well, which I think is important to raise
awareness of haemochromatosis as so many doctors aren’t familiar with it,
unfortunately. This type of genetic testing is essential so that people can get their
diagnosis sooner, get proper treatment and don’t experience the long-term effects
of unmanaged haemochromatosis.