Chris, 73, London

 

My haemochromatosis diagnosis was pretty unexpected. I was diagnosed with Type 2 diabetes in the late ‘90s and my endocrinologist just couldn’t understand why. I had none of the usual risk factors that you’d expect from someone with haemochromatosis. This led to me getting further blood tests and getting a haemochromatosis diagnosis alongside my diabetes.

 

I’d never heard of it before and found it difficult to find information at the time, though I did understand that my diabetes - and my subsequent arthritis - was related to my haemochromatosis. I started my treatment and wanted to find out more about my health, so I joined Haemochromatosis UK. It was far more relevant than other resources I’d found which talked about the condition in relation to diabetes only.

 

The information I’ve had from the charity has always been really useful, especially when it comes to sharing it with family so they can understand it too. It’s reassuring to be able to have that understanding and to know that you’re not alone, as so many people haven’t heard of it and don’t know anyone with it.

 

My family have also used the genetic testing services so that they can be clear about their health and get treatment if they need to. I’d found it really difficult to get a test for my wife when I was first diagnosed, so access to a quick, straightforward testing service was so helpful. Being able to prevent other conditions that are associated with haemochromatosis is really important for your health and future.