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(no subject)From: Jennifer (anonymous@obgyn.net)Fri Oct 20 20:26:00 2000
I have handed out numerous endo brochures both general and ones for teenagers. I have contacted politicians and the media. I have put up posters of Killer Cramps, a poster the EA has done, up at libraries, stores, my obgyn's office and my primary care's office. My husband has informed his co-workers about our plight when I participated in 2 of ERC's candle fundraisers since I was diagnosed in January of this year. I have an endo library of 4- 3 inch 3 ring binders filled with information about endo, how it affects us, how it affects others like our husbands, the drugs used with endo. I have gone out and purchased magazines because they have articles relating to endo in them. I have lent these binders out to women who might have endo-to inform them of what it is. I also have a video library of endo and related stuff like chronic pain relief that I have taken off of TV as well. I wear my endo walk shirt proudly and tell all I can about endo who are willing to listen. I informed the bureau chief editor what endo is, where they can go to verify info and who they can contact and said that I was willing to do an interview but I didn't want it to be all about me because it's not my problem-it's our problem. I'm sorry if you seem to feel it was about me. Newspaper reporters don't write articles on diseases but on events and people in those events and when those events are happening-Kathleen Dooley told me this. She informed me of a way to get our support group on their phone tree of groups in my area. The article was about what endo is and about the support group in my area to help women who have it or think they have it. The article in the paper on endo is in the newspaper's human interest column. I have developed a rapport with Kathleen Dooley. I handed her and the bureau chief thank you cards yesterday morning as well as personally thanking them. She was genuinely interested in our plight and was more than willing to help us out. I thanked her for this. I didn't rant and rave at them for doing an article on this woman's plight with colon cancer and not ours with endo. I simply asked them why her event was considered newsworthy while the endo walk for awareness in DC wasn't (I did attend the walk along with my husband). I understand the fact that people with other diseases have pain associated with them. I have chondromalacia. My legs lock in the straight position where I would have to rub them so that I could bend my knees in the meantime I would be crying. On top of this, I have endo and fibromyalgia. Chondomalacia is a disorder which the softening of the articular cartilage of the kneecaps. It rubs against the thigh bone which causes me pain and agony. I wear knee braces because of it. I know all about pain and agony. I just wanted to inform you of my doings to raise awareness about endo. Jen
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