Posted by Simon (213.122.199.250) on August 31, 2001 at 15:16:13:
In Reply to: There are two things that come to mind...... posted by Charlie S on August 31, 2001 at 05:52:49:
...the truth is what matters, and from that we are more likely to find a cure than by hiding our heads in the sand.
We come up against the usual problem that to say that sickle cell anaemia affects black folk more than white is true, but if we made the converse remark about ch, we would be immediately accused of denigrating the ch experience of black or maybe other groups.
First then is to accumulate evidence. This no-one has done, presumably for fear of falling precisely into that trap. What we do know is that there is a genetic factor involved, so obviously that will re-inforce racial differences.
The nearest we can come is looking at the names on the "where we live" and taking an educated guess. Though clearly an easily discounted way of gathering evidence, in the absence of anything else, what do we have to lose in trying to gain some insight. We could also look at the pictures at Bob's page, or ask those at the various meetings. My experience of these is that all racial minorities are under-represented in such guises.
Additionally, those from outside the European/North American orbit who post are with on or two exceptions clearly of expat nature from names and posts.
Despite this, I did ask Peter Goadsby's Registrar about this recently, and he said he was not aware of any such differences.
Bearing in mind the battles we have getting a lot of doctors to recognise ch with all the advantages we in the West have, how might someone fare who lived in Africa, where life and death illnesses are more of concern to doctors? Even in other countries, would a man dare admit to headaches, let alone CRYING because of them. Further even if there is internet access, there is a huge difference in sharing personal "weaknesses" in such a public forum. (Compare the UK and US for obvious differences, and we like to think we have a lot in common.)
Balancing these views will take a lot of time and energy.
For what it's worth my view is that CH is more prevalent in Western societies, but that the gap will become smaller with time, as information becomes more reliable. I would draw parallels with the balance between men and women, which was though to be as much as 7:1 in favour of men, but we now know is nearer to 3:1.
I would urge that the next proper survey has this question included, and does not have the escape clause that so many do. It is vital statistical data, which may improve the conditions of those who follow us.
Simon