Helping women with chronic illnesses

"Jeanne’s Endo Blog": Endometriosis Is More Common Than AIDS & More Common Than Cancer! Harnessing The Power Of Twitter For Endometriosis Awareness..

Normally I step aside of “Mom or Mommy groups”. I’m well aware that too many endometriosis patients (or other infertility patients) are unable to become mothers and I am very sensitive to this. However, I decided to break my own rules about this for the endo cause. I saw an opportunity to join an online twitter community of over 5,000 women and realized that I’d be foolish not to join/request members’ help getting the word out about endometriosis simply because it is a club for moms. So I hope none of my readers will be offended that I’ve joined a “Mom Club”… because the thought I had in my head when joining this social networking group was that it would be a good place to network with women to HELP endo patients.

Maybe the group can help the twitter campaign we’re doing to promote endometriosis awareness? Maybe some of the members of the group might even retweet our endometriosis messages regarding blog posts, general awareness messages, or even sign our endometriosis awareness petition? Once I joined, I discovered that I could post a blog entry right from my TwitterMoms page. So that’s exactly what I just did.

In an effort to further harness the power of ever-expanding twitter, I joined this group that has 5,000+ members and posted a blog post on this social network… for the purpose of requesting members’ help with retweeting our endometriosis-related tweets. Here is an article about the TwitterMoms group: Redbook: What’s Buzzing on the Net: TwitterMoms.

My blog post on 5,000+ member TwitterMoms

Here is what I posted there:

March is Endometriosis Awareness Month!

Endometriosis affects 89 million women and girls worldwide.

Endometriosis is more common than AIDS and more common than cancer, per the Ohio State University Medical Center!

Source for above statement:

Ohio State University Medical Center

Twitter page: @jeanneendo

Sign here:

Endometriosis Awareness Petition

We currently have an aggressive twitter campaign to tweet endometriosis-related messages with a special hashtag at the end of the messages:


The #endo hashtag is now in the hashdictionary and it is being used daily by many twitter users.

Won’t you join us in supporting endometriosis awareness by simply retweeting #endo tweets??

By the way, anyone who’d like to post the endo awareness petition link is welcome to do so!! Help yourself (link above)… By simply posting this link, you can help with endometriosis awareness in just a few moments’ time!

In the end, I think I made the right decision to join this group because I am now doing further networking for the endo cause. I even found a very nice news writer in the group and exchanged messages with her regarding endometriosis in the media!

Let’s do whatever we can to get accurate information to the public. Inaccurate articles cannot stand unchallenged. We can’t allow myths about endometriosis to keep being spread. We need to keep speaking up about the facts regarding endometriosis.

Right now, sadly, the facts are not always pretty. We’re dealing with an illness that is more common than AIDS and more common than cancer. It affects 89 million women and girls. There is a massive delay from onset of symptoms to diagnosis for most patients (an average of 9.9 years of delay). Even doctors have been known to describe it is “poorly understood” and “mysterious”.

There is good news too! There is hope…

Awareness IS increasing (even in just the last few days that buzz is in the air), media reports are getting corrected, patients are speaking up more, research is being done (even if it’s not as much as we’d like), girls are getting diagnosed younger… So the news is not all bad and we all have the power to do our small part to make things better for ourselves, each other, those who have endo but are not yet diagnosed, and future endometriosis patients.

In mid-March, CureTogether will release its book “Endometriosis Heroes”. Now when is the last time you heard a new endometriosis book was being released? Pretty cool, huh?


P.S. Today is Friday… Twitter users, please don’t forget to participate in Follow Friday! Simply send a tweet with the twitter addresses of those you recommend following. I sent several #followfriday tweets out this morning. Here’s an example of one I sent…

I take that back! Wow! I just did a search on #followfriday tweets and after going back FIFTY screens I only got back to 24 minutes ago! I did my #followfriday tweets about 30 minutes ago and I’m too tired to keep searching! So if you have any questions about how to do #followfriday tweets, please just let me know. Can you imagine there are 50 screens full of tweets for #followfriday in just 24 minutes!!! That’s how big it is. I have had people find my blog after seeing it on #followfriday so I think we should take advantage of it.

By all accounts,
is a HUGE trend on twitter right now, generating lots of traffic. Let’s use it for endometriosis awareness! Plug your favorite endo bloggers. Plug a favorite endometriosis-related post. Send tweets to direct twitter users to endo info they might not see otherwise. Twitter has millions of users. Let’s get their attention!

This article was posted by Jeanne via “Jeanne’s Endo Blog” at

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: "Jeanne’s Endo Blog": Endometriosis Is More Common Than AIDS & More Common Than Cancer! Harnessing The Power Of Twitter For Endometriosis Awareness..


1 Jessica { 03.06.09 at 11:08 pm }

I’m proud of you Jeanne. You overcame your resistance to reach out to those who may need to hear the message of endo awareness. And you learned very quickly how to harness the internet for a good cause.

2 Jeanne { 03.06.09 at 11:52 pm }


Thank you so much! Your unwavering support means so much to me.

You have been really helpful with getting the word out about endometriosis and you have no idea how much it means to me!

I have been struggling terribly to be able to “make the rounds” and read my favorite blogs… even before I became totally consumed with Endometriosis Awareness Month.

I feel guilty that I haven’t read your blog in awhile! I wish I had more time to read because I can never come close to reading everything I want to read.

You were one of the first “non-endo bloggers” to step up to the plate and assist us with retweeting endometriosis messages on twitter that are marked #endo.

You are special, Jessica! 🙂


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