Kelly*, 40, London


I had known about haemochromatosis for a long time as my dad had been diagnosed with it. At the time - about 20 years ago -  we thought it was unlikely that I’d have it too and going to the doctor when you felt healthy wasn’t really the “done thing”. You didn’t really go to the doctors if you felt well, and no-one requested tests like they do now.


Life got in the way after that, and because I felt ok I didn’t really make getting tested a priority. It was always in the back of my mind. I remember when I was pregnant and my doctor suggested I take iron supplements which I said no to, thinking about my dad’s condition and knowing that too much iron could be a problem.


Getting a diagnosis wasn’t straightforward. I had a doctor’s appointment for something else and asked for my ferritin levels to be checked. My levels were quite high but I didn’t really get a confirmation and ended up arranging some private medical tests.


I really had to push to get a diagnosis and at times it felt like it would be easier to just give up, but I felt so strongly about it. Both the private GP and my own GP were dismissive of my high ferritin levels. It was only when I saw a cardiologist that it was picked up, I waited 8 months for another test.


My GP then referred me to a haemotologist and we started to manage my condition. Nobody advised me that other family members should be tested. When I contacted the hospital to ask for a letter for my brother to show his GP they were unable to help because he wasn't their patient. I was advised that I could wait until after the menopause for my treatment which just didn’t feel right.


I discovered Haemochromatosis UK when I was searching for information about my diagnosis online. I used the guidelines that the charity provides to help me understand and manage my condition and have also used the genetic testing service to help my family members get themselves tested - particularly those who live in areas where testing isn’t as readily available. I’d recommend joining for anyone who has their diagnosis and wants to take control of their condition and lifestyle.


*name changed for anonymity