Giving a speech about alopecia at conference

I'm giving a speech at a Toastmaster Conference about my experience with alopecia. I've done one before at a club level and used a diagram to show the various types of alopecia but in a bigger venue I'm not sure the diagram would work well - not so intimate an atmosphere, on a stage etc. Part of the criteria of the speech is that it has to have a message. I'd love some input from you people as to how to get a message across and what that message could be. I suppose for me the message of alopecia is I've had to come to terms with my changed appearance and still feel okay with myself. That I am more than my hair. I'd love to know what you have learned from having alopcia so please let me know. The speech is only 2 weeks away!

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Comment by Tallgirl on October 4, 2010 at 8:20pm
The biggest things about alopecia are:
(a) the shock of discovery and diagnosis
(b) the expense, nonfunding from insurance and just having to go to treatments and wig options
(c) the feelings about religion, love, dating and marriage with this unpredictable AA
(d) the decision to shave
(e) that it changes how you have to approach the world differently once you realize your hair will not grow in anymore (AU), including choices in sports, fashion, judgmental employers/spouses/friends/public
(f) taunts, wig sabotage and rude comments in public (especially for children)
(g) assumptions that you are dying of cancer/endless, repeated questions to interrupt your day

You could have willing volunteers wear bald caps, spotty bald/hair caps that simulate AA, or bad wigs bought on a restricted budget that are waaaay different than, say, the Toastmaster's original hair. Then role play scenarios...date, job, shopping, reunion, school, etc.

You could have them imagine what would happen if they had just received news that there is no known cause or cure, then have to tell an overbearing parent or love interest...or decide how to return to school.

Bringing it personally to audience members will really make the point, and will bring it from a chart (which you could duplicate on a handout so they could see it and read later) right to their own tables. Having them realize it COULD happen to their own family members or themselves would really make them walk in your shoes mentally for an hour. You could even play the dermatologist giving them each the news based on the hair root, appearance of bald spot, fingernails, etc....they could close their eyes for that part. When they open eyes, they will have to face the world with this new knowledge. Walk them through the treatments, success rate of treatment, possible AT or AU over a lifetime, having to attend life events and make choices beyond curling one's own hair.

Then tell the choice you made, briefly, and that if it happens that their own genetics reveal themselves this way some day (have research handy), you'd be glad to help. Or offer up www.naaf.org and www.alopeciaworld.net as resources. Good luck! ..Comment

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