Today, I started my first phlebotomy. But, wait, hold up...let's back the train up a bit and I'll give you some context around why I'm participating in a strange, medieval-like blood letting ritual.
For years now, I've been feeling ill. Really ill. The kind of ill that gives one pause to examine a life and recommit to pushing new boundaries. And also the kind of ill that just standing up can feel really painful, and enough to drive one back to bed or the sofa curled up in a ball.
My story is just like many people with hemochromatosis, with the mysterious ailments mixed in with others that are fairly common. Except that, it's one thing to develop one mysterious or premature illness. It's quite another to experience a 'cluster' of them. And so my story involves overwhelmed doctors who were beside themselves with concern but unable to solve the mystery. My story also involves specialists who provided pieces of the puzzle. And even one or two arrogant doctors who lectured me on hypochondria. (Yes I'm very tempted to call them up and chew them out but not sure what good that would do, better to put my energy to positive things like learning about my condition).
I can't really describe how this feels...validating, upsetting, shocking, reassuring, a relief? It's all these things mixed into a ball right now until I have time to really digest this. And in reality, I'm not done yet. I have to get the ultrasound for my liver to check for cirrhosis. And maybe an EKG for my heart.
But assuming my ferritin levels have been low enough not to cause that kind of damage or that the entire length of my life so far, 40 years, hasn't been long term enough to cause it either, then I will be fine.
But others are not. To be honest, a diagnosis of this at 40 is very positive. Most women don't even get diagnosed until their 50s or 60s, so I've read, at that point maybe too late to do something about the myriad of complications high iron causes.
I have found very little literature or awareness campaigns about Hemochromatosis in the USA. Most of it is in Canada or Europe. I wonder why since it's very common - like 1 in 200 people. It seems like we talk a lot about heart ailments and diabetes in this country as a leading cause of death, and as a consequence of poor eating habits.
Yet, if this disease is so common, and no doctors seem to do any routine blood work for high ferritin levels, then how many of those 'leading causes of death' are attributed to Hemochromatosis and I add *preventable*?
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