Posted by Bob P on June 07, 1999 at 18:03:28:
In Reply to: Is this something that WE can do? posted by drummer on June 07, 1999 at 04:48:24:
Drum,
The key to what you ask is the Doctors. They won't give out the names of other patients but will they give the web address to the other patients. We may not be able to find other sufferers but we can help other sufferers find us! I'm not sure if the best way to do this is to e-mail local Dr.s in our areas, pass the word to the docs through medical organizations (anyone have connections with JAMA), direct mailings, through registries or pharmacutical companies or all the above.
I do know my doc also took down the web address when I mentioned it to him back in January. If the statistic that 1% of the population has CH is correct (seems high to me) that means that in my town of 40,000 there should be 400 clusterheads. I've met 1! Where are the others.
I'm going to embark on a mission to contact every medical facility in my town to make sure they know of the site.
Thanks for the push Drummer.
Bob P