Posted by Tom on March 05, 1999 at 14:46:05:
In Reply to: What a fluke!! posted by Toni on March 05, 1999 at 12:54:56:
I think this show was filmed a long time ago and wasn't focused on our little group. Clusters are still pretty rare although they are getting more "airtime" in the medical community now than even 5-10 years ago. Try not to dwell on our being "left out" there is still a lot of education and awareness that needs to happen before CH gets much public attention and research grant money. One sign (if it is a good one) is that it seems people are now being mis-diagnosed with CH pretty regularly and are then finding this site. Hell, I couldn't even get diagnosed with it for over 5 years! I happened upon an Italian doc in a NATO hospital and he knew how to treat it with O2. That was roughly 10 years ago, since then there's been some progress. Not enough but some. We'll get there, but in the meantime we will have to find understanding or openminded medical folk and lead them toward the answers.
Hang in there,
tom