OUCH - One Man's Vision

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Posted by Jack ( on June 04, 2000 at 12:21:34:

There are now 80 members of OUCH. You know who you are and I know who you are.

Two questions come up from time to time:
“Why join OUCH ?” and “What do I get for my $25?”.

I will answer the 2nd question first. If you are looking for some return on a $25 investment, I think you may have bigger problems than clusters. These problems may include the following:

1) Dire, excruciating poverty
2) Acute Parsimoniousness
3) Chronic Selfishness
4) Severe Mental Illness

I will now give my answer to question 1.

OUCH is pretty much what we make of it. These things will certainly include social services type of stuff, education, lobbying and the like. My personal interest is a little different and it goes like this:

I think that the greatest value of OUCH is the development of a registry of sufferers. A registry that could be used for research. Let me give you an example of what I am talking about. Much of what we know about heart disease does not come from the laboratory but rather an empirical study of people over time. There is a great model and it is the Framingham Heart Study in Mass. It has been going on for many years. When Drs. advise us to do this or that regarding heart disease it is very often a result of the study of the Framingham characters. You know what I am talking about

Someday we will find a research team who wants to study clusters. We will be ready with information regarding hundreds and maybe thousands of sufferers. We will have addresses and basic demographics ready for these researchers who will then do a real scientific study of this disease. A study that will tell us lots of good stuff. This good stuff may include things like this:

1) If one develops chronic clusters before the age of 25 they have a 99% chance of outgrowing them by 40.

2) There is no correlation between clusters and any other chronic illness

3) The use of preventative medications between cycles for those who are episodic does or does not increase the intensity/frequency of clusters.

4) Clusters that begin after the age of 40 take a different course than those that begin earlier.

5) There is absolutely no correlation between smoking and drinking and developing clusters. Nor does smoking and drinking make clusters worse. Of course, the inverse may be true and a Spartan lifestyle of no smoking/drinking and regular exercise can have a pronounced effect on the course of clusters.

6) And many other thingys

This is the stuff I want to know. I want to know it for lots of reasons, most of which are too obvious to state. Clusters are a disease of a lifetime. There is much to learn.

Sorry for this lengthy polemic but I really mean this.

Have a nice day.

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