Hemochromatosis Support Group

When I first learned about hemochromatosis I did what I usually do when faced with a challenge: research it. My initial thought after learning about the possibility of liver transplants was, "Great! Even if the hemochromatosis effects get bad and worse comes to worst, at least there's always the transplant alternative." However, as I researched it further, I learned that 1.) Because of excess iron's effects on the entire system, by the time a liver transplant becomes necessary, it is unlikely that the body will be in good enough condition to accept it. 2.) Because of #1, most doctors don't consider us for transplants. Deflating, and cyclical, huh?!

You're right, Judy. In addition to that, the liver isn't what's causing the iron overload, it's what's being damaged by it, along with the heart, brain, skin, bones, you name it! Putting in a perfectly good liver that will only be destroyed isn't a good idea. Personally, I'll let myself die before I take a liver that would help someone else live knowing the liver won't be destroyed by their body.

The one treatment I have been searching for good answers about is chelation. I know it's pretty massive right now, but I think in the future it may have possibilities.

Another treatment that holds hope for us is gene therapy. Now that they have isolated the gene that is doing this to us replacing the defective gene with a good one could solve the problem completely. That's a long way off, but we may see it in our lifetimes if we can hold on that long.

Sue

I've wondered about the old kind of gastric bypass...not "lap band" but the kind that reroutes past the duodenum. I understand that this is the portion of the stomach responsible for much of iron's metabolism....

Doug,
I'm curious as to the question? I've found through experience that removal of the iron through phlebotomies, takes the load off the liver. It is an amazing organ. Many of us have experienced such improvement in liver function as the iron is removed. I was diagnosed with cirrhosis in 93 when I got the biopsy. It scared the s**t out of me. Sixteen years later and well over 150 phlebs and my liver function tests are still good.
Best of luck with your inquiry,
tuistone

Just a thought, as this is a liver-related thread, so to speak. I have been taking for the last 6 months (and will continue to take) milk thistle tabs, which help absorb toxins from the liver. They're not too pricey (here's where I get them from, but you can Google for the US etc >> http://www.healthydirect.com ) and here's the WIKI article about it: http://en.wikipedia.org/wiki/Milk_...