Posted by Bennie Sue (188.8.131.52) on September 10, 2000 at 13:19:42:
CH.com is a *support site* and a very successful one.
But CH.com alone is not enough. We can talk about the effect CH has on our daily lives, but as individuals we can do little to remedy the problems CH creates for us.
That is why O.U.C.H. was created. A few original visitors to CH.com saw that with organization we could do something that most of us desire so desperately - educate the rest of the world about our plight and gain understanding from others around us who are not so afflicted. OUCH is a *service*
Ways in which OUCH works to educate others about our ailments include:
1. Providing brochures and a newletter describing CH pain. a. Distributing these materials among our doctors and emergency room personnel can help us get effectivce medications and help smoothe the way for the next sufferer who comes along.
These printed materials can provide a measure of credibility
whenever we must consult those who are unfamiliar with
the nature of our pain.
b.These materials can help convince our bosses and co-workers that we are not shirkers: Eventually an attack strikes while we are on the job or a cycle forces us to call in sick. Our bosses may be wary of our claims about an ailment they have never heard of. We can show them how severe and debilitating CH can be.
c.Sometimes even family members who have seen us at the peak ofexcruciating pain may feel we are wimps exaggerating our condition.They may even be good supporters but secretely believe that we could overcome our ailment if we just tried hard enough.
These people will listen more attentively if they know there are thousands of others with the same affliction.
d. Our friends and the general public need to know what CH means. Perhaps we cannot coach our child's softball team because we might not be physically able to attend every practice and every game.
2. Planning and executing a Cluster Headache Awareness Week (proposed and spearheaded by Donna Harlacz). During this time we send out news releases to various media with the hope they will help us educate others about CH. This year the Liaison Committee and many members of the message board worked diligently to mail and deliver our CH materials by hand. With OUCH backing this event will grow.
We can offer seminars and speeches to the public, sponsor local contests, appear on local TV and radio programs.
a.A New York public radio station plans to broadcast a program about CH. This evolved from correspondence generated by Bob Pahlow.
b.The Discovery Health producers are filming some of our people for a future airing. The officers of OUCH and the Media Committee have aided them in their research and in suggesting candidates for appearance on the program.
3. The O.U.C.H. Web site is the definitive source of information about the organization, its objectives, bylaws, membership, committee members, and officers. No officer or member may receive any financial compensation for work with O.U.C.H.
a. Here you will find links to other headache sites. Some of these have agreed to put our address on their sites.
b.We are now preparing a page which will list those doctors recommended by CH sufferers.
c.You may have suggestions about what you would like to see on this site - articles about new CH research, statistics about CH, news reports about our activities,reports about ongoing committee activities, and a chance for you to participate.
d. We boast as an honorary member Dr. Peter J. Goadsby,
a leading researcher into CH and other types of head pain.He plans to film a documentary about CH with the assistance of OU.C.H.er Simon Bower.
e. With the help of many of you I am still working on the cluster headache questionnaire that I hope OUCH will endorse when it is perfected. It will provide the world's most comprehensive compendium of facts about CH as we humans experience it.
Arguments for not joining OUCH:
The MB is enough for me.
I don't know the people at OUCH. Should I trust them?
Small organizations run by a smal group of people accomplish small results.
I can't afford to spend the money.
I have not seen anything accomplished by this group as yet.
O.U.C.H.ers are a clique that I would not fit into.
I don't want to be pressured into spending my valuable time helping with committee work.
If any of these objections sound familiar to you, please reread the above and reconsider your decision.
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