Eric made an interesting comment on my last iron overload post. He wondered why my wife has not pursued phlebotomy as it is a recognized treatment for iron overload. Eric states "Blood banks are happy to see you because they know they will see you many more times than regular donors."
Eric's comment and concern are both appreciated. Unfortunately, we have hit a few bumps in the road on our way to bloodletting. Here is my current understanding of the situation. Please feel free to comment if you think I have got this wrong--we have heard of regional variations in the way some of these things are handled:
1. Around 1996 the US changed the rules for blood donation to exclude all persons who lived in the UK during the time of mad cow disease. That includes us, so we have not been able to give blood since then. In fact, Chey was a regular donor before this ruling and we suspect that stopping the donations at that time contributed to the build up of iron--her iron overload symptoms started to manifest after that.
2. Voluntary donations of blood are not accepted if less than 8 weeks apart. So, according to our doctor, a routine of accelerated phlebotomy to treat hemochromatosis requires a prescription (I know it sounds weird: a prescription to give something as opposed to take something).
3. Some blood banks lack a means of categorizing blood that is 'donated' by iron overload sufferers and so they do not accept it (apparently this varies by region). Strange but true (according to the Iron Disorders Institute Guide to Hemochromatosis).
So, common sense would indicate blood-letting is a simple fix but reality is proving less sensible. We have not yet tried the amateur freelance phlebotomy approach but we have been tempted (I just wish I had paid more attention to how you stop the flow of blood once it's been started).
And I should add that we are beginning to run into the "Dr. No" syndrome. That is the "Dr No. Big Deal" syndrome, when your doctor decides you're making too much fuss about your illness and starts telling you you're exaggerating. You hear things like "lots of people feel tired at your age" and "it's normal to feel depressed this time of year" and "your test results are close enough, nothting to worry about" (when in fact the results are clearly abnormal and frankly worrying). We are seeking to address this problem without alienating the medical profession in our small community.