Newspaper, Masters Papers, what next?

Today was quite a day! After posting to Girl, Dislocated (my favorite blog) last night that I'd given up on our Ehlers-Danlos article getting published in the local paper I found out today that it is! Our local paper sent out a photographer to get a picture of Bug. She ended up taking a ton, some doing a puzzle with her Grandmother, some with her toy poodle, another in her room. I have no idea what she will use, or even what the article says. I don't even know what angle the article is taking since I tried to give them as many angels as possible. It doesn't even matter, I'm just pumped!

To top things off, this came on the heels of an interview with a friend of ours who is finishing her teaching Masters. She has a paper to write on either a person with a disability or a parent of a child with a disability. She had asked me if I'd like to be interviewed and of course I jumped on it. She wrote some awesome questions, and I spent over an hour answering them. The coolest part was the reason she asked me was to help us educate other people about Ehlers-Danlos Syndrome. She knew that few people had heard of it and decided that it would be great to share something different with her class and in turn help Bug and I. I just thought that was great. I am really excited about this as well since her paper is being shared with people in the educational system it could reach some incoming teachers (as well as current ones) and let them know about some of the ways we've worked accommodations out for Bug.

I have never advocated in these ways before. Depending on how it turns out I might try to do more of it. :) It's amazing how I've moved from worrying about educating myself, to educating our school, to the AEA, to working on this blog, and now have done two interviews. I would have never guessed this is the path I would be led down even a year ago. It's just my desire to help others like my daughter just keeps gaining more momentum and so far I'm still embracing it and seeing where it leads me. Of course, I could change my mind after I see the article! LOL


Girl, Dislocated said...

It makes me feel sooo special that my blog is your favorite! :)

That is incredibly exciting that the newspaper is publishing the article! It'll definitely increase EDS awareness as it circulates, plus it's SO great to hear that future educators are going to be entering the field with some sort of EDS knowledge. It's pretty safe to say that your interviews are going to make life a little easier for many EDSers!

And, I think a lot of us are finding ourselves in these sort of awareness-raising capacities, and eventually getting used to the role because let's face it, who else is going to advocate for us? The doctors who glossed over a paragraph about EDS back in med school and vaguely remember a little about it, if at all? I don't think so.

BugsMom said...


I know, it does seem there is such a lack of awareness in the general medical community. I know that the Dr's here in town certainly didn't know anything. I don't blame them now that I know more and know this is common in many towns big and small.

Someone said not too long ago on an EDS e-mail list that EDS isn't researched like other conditions because it doesn't effect enough people. There isn't as much money to be made on it like helping diabetes, breast cancer, etc. I'm starting to wonder if there is more truth to that than I first thought! :)