"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:

#endo

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?

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS

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, #followfriday 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 www.endendoat.blogspot.com.

'Jeanne's Endo Blog': Stacy's Endometriosis Story - Preview of the CureTogether Book "Endometriosis Heroes"

My dear friend Stacy wrote the following piece for inclusion in a book CureTogether will be releasing shortly called "Endometriosis Heroes". Here is her story, written just a few days ago...

I have endometriosis and I can't tell you how much I appreciate seeing information about it. My hope is that someone will see themselves in my story and be able to get a diagnosis much sooner than I was.

From the time that my menstrual cycle started I was in horrible pain each month. I remember in junior high school having to run out of classrooms because my heavy flow would soak through a tampon and a pad before class was over and teachers would not let us use the bathroom midway through class. The pain seemed to be worse when it was hot out and I would lay on the floor of the basement for hours at a time because it was just too painful to move. Because my cramping also came with diarrhea I had a number of tests on my upper and lower GI system. When the doctors didn't find anything they told my parents I was a hypochondriac. No one considered that I may have gynecological issues.

During college I finally purchased health insurance and began the journey of finding out what was wrong. Eventually I had laparoscopic surgery and was diagnosed with endo. I saw more than a dozen doctors during this time. I was in pain and scared. I got married just before my diagnosis and as my health deteriorated so did my marriage. My husband felt "duped" by marrying a healthy, energetic person who was now debilitated by pain. I tried everything: having nerves in my presacral area severed, acupuncture, massage, biofeedback, physical therapy etc. Eventually my marriage ended and I feel it was a direct result of the endo.

I am now happily remarried and mom of a precious little girl and I still struggle with endo. My period started today and to say that I am petrified of the pain I will be feeling over the next three days (despite narcotics) is not an exaggeration. I was able to give birth to my daughter without pain medication because labor actually hurt less than my monthly period. I pray that my little girl will not grow up to have endo and that research will save future generations from this pain. I find it very sad that my great grandmother and I have dealt with the same disease and that there was not much more that could be done for me in comparison to what was done for her when she was my age.

My advice to someone with endo is this: find a doctor you can trust who respects you, follow every path you can to manage your pain, focus on the positives in your life and be thankful you have been blessed with the gift of life.

Thank you for sharing your story, Stacy!! Sharing our stories helps educate the public and make fellow patients feel less alone!

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: Endometriosis Awareness In Puerto Rico And Endometriosis Facebook Groups

I received the following message from Issys Pouerie who runs Endometriosis Puerto Rico.

Issys and I "met" via the Facebook endometriosis support group Together We Can Cure Endometriosis started by CureTogether.

Issys recently emailed me back after I had emailed her to let her know that I have a Babel Fish translator on my blog for various languages, including Spanish:

She responded:

I will tell my group of the Babel Fish option for those that have trouble with English.

Let us know how we can help. Feel free to include/mention our group for those that speak Spanish.

Good luck and talk to you soon!!

Endometriosis Puerto Rico

Issys has a large online support group on Facebook (with over 700 members in Puerto Rico). Her group has helped a great deal in spreading the word about the following petition:

Create Endometriosis Awareness & Understanding

Please join us on Facebook at the links listed here for these two endometriosis groups:

Together We Can Cure Endometriosis started by CureTogether

Endometriosis Puerto Rico

Also, if you do not speak English, please use the Babel Fish translator in the right sidebar of this blog. It will translate this blog from English to the following languages:

Endometriosis support from English to Chinese - simp
Endometriosis support from English to Chinese - trad
Endometriosis support from English to Dutch
Endometriosis support from English to French
Endometriosis support from English to German
Endometriosis support from English to Greek
Endometriosis support from English to Italian
Endometriosis support from English to Japanese
Endometriosis support from English to Korean
Endometriosis support from English to Portuguese
Endometriosis support from English to Russian
Endometriosis support from English to Spanish

If you read this blog using the translator & decide to post comments please post a translator so that I'll be able to read your comments!

Thank you!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: Media Syndicate's Article On Endometriosis

Here is an endometriosis article just published today on Media Syndicate. It was also listed on a Google alert email for endometriosis:

Media Syndicate's article:
"Endometriosis Patients Demand Awareness, Research, and Better Treatments: Sufferers Share What Works and What Does Not"

The article was written by Faren Inglett of CureTogether.

Cure Together

Please see the endometriosis awareness and education petition that I will submit to Oprah and The View later this week:

Create Awareness & Understanding Of Endometriosis

This petition may be signed by ANYONE interested in furthering the endometriosis cause. So please spread the word!

Related posts:

Monday, November 3, 2008 Endometriosis Blog: "Dancing With The Stars" Endometriosis Blog Posts (Update) -- Tracylynn's Comments!!!

Friday, October 31, 2008 Endometriosis Blog: PLEASE Sign Petition To "Create Endometriosis Awareness & Understanding"!!! ***(Please read... THIS POST HAS BEEN UPDATED!!!!)***

Friday, October 31, 2008 Endometriosis Blog: 'Jeanne's Endo Blog' Featured On: "Cision's Media Updates - Medical & Health" (UPDATED)

Thursday, October 30, 2008 Endometriosis Blog: Dancing With The Stars' Lacey Schwimmer Reports She Has Been Diagnosed With Endometriosis Too **(UPDATED)**

Friday, October 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy ***(UPDATED)**

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: VIDEO About CureTogether, A Medical Research Organization!!

Faren from CureTogether posted this cool video about their medical organization... which is researching numerous illnesses.

It's primary focus initially is on endometriosis, vulvodynia, and migraines. However, they have plans to research far more conditions than these.

CureTogether Video



CureTogether just started a Facebook group called "Together We Can Cure Endometriosis".

Please just click on the Facebook button in my right sidebar to join this exciting new group!!

Related articles:

Tuesday, July 15, 2008 Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

For some reason I'm having trouble getting hyperlinks to work for the related links but if you just search my blog with the term "CureTogether", you'll find the above-mentioned links. Or just look in my blog's archives.

I'm known as "Jeanne Endo" on Facebook. Hope to see you there in the "Together We Can Cure Endometriosis" group!!!!!

Thank you!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!

Meet Alexandra Carmichael! She is the Co-Founder of CureTogether. It is a medical research organization you will learn about in this post! I met Alexandra myself (via an email initially and then by phone) just a few short days ago! I have some VERY EXCITING news to announce. It's about CureTogether's official launch today!! Today (July 15, 2008) marks the launch of a NEW medical research organization!

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This organization, CureTogether, has chosen 3 conditions on which to focus their research initially:

+++++++++++++++++++++

ENDOMETRIOSIS

VULVODYNIA

MIGRAINES

+++++++++++++++++++++

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You heard me right! CureTogether has picked 3 illnesses to research initially and every single one of them affects multiple women in my local endometriosis support group!!!

Who knows how many endometriosis patients worldwide ALSO are affected by vulvodynia and/or migraines??? I know of one local support group member who has all three of the above!! This launch of a new medical research organization with such fantastic priorities is fabulous and exciting news!!!

Their website (also launching today!) is:

http://www.curetogether.com/

You could be one of the very first visitors to their website simply by clicking the link above. If you do visit their site, I'm sure you'll be as thrilled as I was when I first laid eyes on it!!!

These conditions directly affect so many women (and men too, of course, in the case of migraines). These conditions also affect the families, friends, and sometimes even employers of the patients who are directly impacted by ENDOMETRIOSIS, VULVODYNIA, and MIGRAINES. These are serious conditions for the patients who have them. This is a massive milestone: a medical research organization that is specifically targeting illnesses they view as underfunded and in need of research... like endometriosis!

This past weekend, I had the pleasure of talking with Alexandra Carmichael by phone (see her photo above this post). She and I talked about her organization, CureTogether. Alexandra Carmichael and her husband, Daniel Reda, have Co-Founded this medical research organization. If you view the "Our Team" section of their new www.CureTogether.com website, you can read their bio information. You will also be able to read about Clarence Chandran, Advisor and Chairman of Chandran Family Foundation Inc. AND about Dr. Ursula Wesselmann. She is Professor of Anesthesiology and Neurology in the Department of Anesthesiology/Division of Pain Management at the University of Alabama at Birmingham. She is also a Scientific Advisor for CureTogether (www.CureTogether.com).

This organization, CureTogether, is just launching today and it already boasts a talented group of individuals who care deeply about helping endometriosis, vulvodynia, and migraine patients!! It was all I could do to wait from this past weekend until today to post this article because I am so excited! I was thrilled after viewing the site. I was psyched after Alexandra Carmichael emailed me to announce her organization's launch on July 15, 2008. Finally, I am absolutely ecstatic after speaking with Alexandra by phone this past weekend. Her passion for this research is outstanding and I cannot wait to see what this organization accomplishes. It will surely be a great deal, based on what I have learned in just the past few days.

It is with great honor that I previewed the www.CureTogether.com website just a few days early. It was exciting to see what the site already had before the organization had even launched. I can't imagine the heights this organization will reach after speaking with Alexandra Carmichael, viewing the site, and exchanging numerous emails with her this past week.

It is an HONOR to announce CureTogether to the world from my humble little "endo blog".

PLEASE take a moment to look at CureTogether's great website and see what all the buzz is about! I sure am glad Alexandra Carmichael stumbled upon my "Jeanne's Endo Blog" a few days ago and emailed me about CureTogether's launch! I would like to thank her for informing me about CureTogether!

I welcome any comments from my readers here on my endo blog (just click comments at the end of this article to post your comments/feedback). Also, I think you can comment on CureTogether's website directly with feedback. (I believe it will also accept your comments online because their site took my comments the other day pre-launch). I'm hoping my local endometriosis support group members will give CureTogether a warm welcome too!

Please post your feedback both here AND at their site if you can.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.