The trouble with having a disease like hemochromatosis is that no one takes you seriously. Who has ever heard of it? "Hemochromawhatzit?" is the usual reaction. How many intense victims of iron over-loading are featured in prime time broadcasts? "Yes, Katie, things are looking grim here at the Beeblebrox household. Big Z just got the news from 'Doc Holliday' that he has the Big H." But when Wolf Blitzer and company discover that the malady isn't Hepatitis D or even hemoroids, the house lights go down and the camera crews all slink off into the night, except for the CNN colonoscopy crew. While it is true that terrible ancillary diseases can be contracted as a result of hemochromatosis, the inevitable response at such a development would be "So, your iron-caked liver and pancreas could have been avoided, eh? Boy what a non-story this is!"
Another aspect of the non-importance of the disease is the nature of its cure or treatment. There is the four to six months of phlebotomies which might have an appeal to the viewing public save for the fact that we have far more exciting blood-lettings on the five o'clock news. If I were to say, "Hey, the 14-gauge needle is no picnic, boys!" The reply would have to be "Poor baby" which, of course, implies that I only have neonatal hemochromatosis. Nothing here but patronizing of the first water.
In addition, it is clear that not much research has been done in discovering a cure for this genetic malady. I have in my salmon folder articles from the "Iron Disorders Institute", the "Iron Overload Diseases Association", "Life Extension" , a bunch of other stuff from "ironoverload.com", Northwestern University, the US Department of Health and Human Services, Adult Health Advisor 2008, "eMedicineHealth.com", plus all of the detritus that I have obtained from "Doc Holliday". Most of this material looks just like my blog except for the humor and the rather dubious taste in music. What is interesting about all of this is that none of the parties in the business have reached a consensus with any of the others, except by plagiarism. Most of the statistical information that I have provided the readers of my blog has come from the U.S. Department of Health and Human Services and "ironoverload.com" My motive for doing so was that I thought that I actually understood what they were saying. For example: in speaking of liver complications, the USDHHS simply states that iron-overloading will cause cirrhosis of the liver which will seriously effect the ability of the liver to help with digestion and the removal of toxins from the body. That seems to be fairly clear, so clear in fact that I could easily compare it to a failing sewer system. The "Iron Disorders Institute", however, lists the complications thusly
Signs in the symptomatic patient by system:
Cutaneous stigmata of chronic liver disease
Now there is no fun in this, even though I understand every third word. So my statistics come from sources who can actually communicate in the English language instead of Pig-Latin and Fraternity Greek. That may be an iffy sort of approach, but I couldn't tell a joke to Socrates to save my life.
The heart of the matter is that there is no money in doing research, finding a cure, or even making the treatment protocol more appealing. Who is going to give a $50,000,000.00 grant to someone to invent a 14-gauge needle that doesn't hurt going in? In a country boasting 250,000,000 souls, only 1.5 million have the gene mutation for hemochromatosis according to the U.S Centers for Disease Control and Prevention. How many of them even know that they have the affliction? To the American Medical Association we are iron pyrites, Fool's Gold. We look like we ought to be cash cows, but we aren't. So where can you go to get a little respect for iron pyrite over-load? Maybe Jamaica.
Waters Blue - This morning I was prancing through the text of the first volume of my autobiography, in preparation for its printing in a month or so. As I was reviewing...
7 years ago