Re: (no subject) ((Jen))
From: Marlene (anonymous@obgyn.net)
Sun Oct 22 09:52:56 2000
Hi Jen:
You have without a doubt been busy and actively working towards
recognition of endo.
It's great the article generated more interest about endo.
That is all our common goal.....interest about our disease and a cure.
Hope your having a good weekend!!!
Best Regards
At Fri, 20 Oct 2000, Jennifer wrote:
>
>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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