Hi all. I just came off one of my worst physical nights performing. I want those closest to me and those I work with to understand exactly what I have and how it affects me physically and emotionally. It’s important to me that you all have a better understanding. It’s been harder to handle here of late. My most recent visit to the doctor provided me with some information that’s easy to communicate and understand. I hope this helps. A lot of you have had a lot of questions for me about my condition and I hadn’t had it explained to me in a very lucid way until my last appointment.
Hemochromatosis is a condition in which my body is overloaded with iron. The excess iron accumulates in various organs. It’s hereditary. One of ten persons in the U.S. carries the abnormal gene, and two to three per 1000 inherit a copy from both parents. It’s not curable, but treatment can prevent progression.
The most common symptoms include darkening or jaundice of the skin, arthritis, mostly weakness and something else which I’d rather not disclose and admit! Most inevitably develop diabetes, liver disease, heart disease, thyroid disease and/or liver cancer.
The therapy of choice is the removal of iron from my blood through drawing blood once or twice a week. There’s an experimental medicine that can be pumped under my skin over several hours each day. But, the medication can cause hearing loss.
I have to stay away from iron pills or vitamin C because it can increase the toxicity of the iron in my blood. I can’t drink alcohol because it increases my risk for liver disease. I also can’t eat any kind of shellfish because I’m at a higher risk for severe infection from several organisms that may occur in shellfish. Exercise and heavy lifting is restricted, too, because my heart and spleen are enlarged as a result of the hemochromatosis.
The weakness affects me emotionally. Some days are better than others. Sometimes my sluggishness, non-responsiveness or passiveness is a reflection of how drained I am. It’s difficult for me to verbalize exactly what it’s like. Almost daydream-like without the ease in ability to snap out of it. No matter how much rest or sleep I get, it makes little difference in the way it takes its toll on me. It’s extremely frustrating. My mind’s alert and ready to rock and roll, but my body wants to slow dance! It renders me more unproductive than I want to be and renders me quite antisocial at times. I use to keep a very busy schedule of playing three theatre productions at once, working, writing, gigging, etc. It’s too difficult for me, now. I’m only 27. I don’t want to feel 72 anymore!
How much damage it’s done has yet to be determined with a biopsy of my liver. I’m not looking forward to that. That’s a stupid thing to say. Who looks forward to a liver biopsy!
Well, I’ll leave it at that. As I learn more, I’ll share it with all of you. I’m more concerned about helping Carol Anne find rest in between feeding our beautiful boy! She’s an incredible woman. Timmy’s a dream come true! XO, Iron Man