Jeanie

“I think there needs to be more awareness for doctors to test for hemochromatosis.”

I used to be really active. I participated in lots of sports, things like tennis, skiing, running, going to the gym. I loved swimming.

When I was 55, my joints were hurting quite badly and I went to my GP. She sent me to a rheumatologist, a very good one, who sat me down and talked to me about my family and looked at my body.

He looked at my hands and my skin, and asked me about both of my parents. And he said, “I think I know what this is. I’m going to send you for a simple blood test, and then you come back and see me.” Which I did. And he had nailed it. The tests showed I had hemochromatosis, and my full diagnosis included severe and prolonged osteoarthritis.

It was devastating. I had a business of my own. I produced photos. I managed photo shoots, usually for international photographers. So I was really independent and I was making a good living doing it, but all of the sudden I was told that I have five joints that needed to be replaced. I couldn’t work anymore. I couldn’t stand for any period of time and my joints just got worse and worse. My first surgery was a knee replacement, then a shoulder, then a hip at which time my left pelvis crumbled. I had an excellent surgeon who had the knowledge to rebuild my left pelvis. I spent five weeks in hospital for that one. Currently, I am waiting for the other knee to be replaced, the other shoulder to be replaced and for a surgeon consultation for one of my ankles.

Treatment started out with me going for phlebotomies very regularly, about once a week. That brought my iron down, but in the meantime I was still waiting for my joint replacements. Now, at this point in time, I still go for phlebotomies but less frequently. I get my blood checked every three months.

Looking back at our family history, my mother and father and an older brother are all deceased so I don’t know if they had the disorder, but I’m fairly certain my mother did.

Before I was diagnosed, I had body aches and pains for some time. I had numerous blood tests taken over the years, and not once did any of my doctors check my ferritin levels.

I think there needs to be more awareness for doctors to test for hemochromatosis. As soon as they know that their patient is of a Northern European bloodline, they should just test for this disorder. It’s a very simple remedy to something that is very simple to diagnose.

Despite how hard it has been, I still feel very fortunate that I’ve gotten through and managed my condition thus far. I have a very strong inner strength, and a lot of will, which is what it takes to get through something like this. In the end, I may well qualify as a Bionic Woman!