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2/27/2009

'Jeanne's Endo Blog': March is National Endometriosis Awareness Month

I saw this link thanks to Sandy Robinson listing it on the Fighting Fatigue blog.

It's so great to see endometriosis awareness increasing!!! This link gives the history on when National Endometriosis Awareness Month officially started being observed.

March is National Endometriosis Awareness Month
Endometriosis is a chronic condition that affects over 5.5 million women in the United States and Canada.

March is National Endometriosis Awareness Month

If you pull up the above link, you'll see that you can comment to it (as I did there) and you can "share" it (as I just did by posting the link above on Facebook).

Let's all work together to increase endometriosis awareness. Reading the link above, commenting, and linking it to Facebook probably took me all of 3 minutes total. Won't you join me in sharing this link?

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

15 comments:

Yaya said...

Okay, I just commented on the article.

I'm not sure what you mean by linking it to facebook. Do you just mean to post it on our wall?

Jeanne said...

Alicia,

Wow! You are fast!!

I'll have to go read your comment. Thanks for doing that!

As far as Facebook, I meant at the bottom of the article you just click on:

"Click to share this content"

You pick the Facebook icon and that takes you to a Facebook signon screen where you can just login and post it to your profile.

Make sense? Sorry I didn't explain it very well.

Jeanne

Jeanne said...

Readers,

Here is the perfect comment Alicia (Yaya) just posted to the link in this article:

"Yes, endometriosis awareness needs to be more publicized. So many people are misunderstood or frankly, not informed about the illness at all, making those living with the illness suffer alone".

Thank you, Alicia!!

Jeanne

Fighting Fatigue said...

Hi Jeanne! Thanks so much for posting a link to my article on Endometriosis Awareness Month! :) You are doing a terrific job on your site! Take care and talk at you soon.

Jeanne said...

Fighting Fatigue,

Thanks for stopping by! I appreciate your kind words. :)

Jeanne

Fenz said...

we need a 'world' endometriosis month for those of us who don't live in america or canada!

Jeanne said...

Fenz,

Join the party! There's no law saying you can't participate just as fully in Endometriosis Awareness Month elsewhere!

Have you signed the endo awareness petition? We have signatures from all over the world!

Have you written to Mariela Azcuy yet? Have you visited Donna's blog? (See previous posts for info).

You do NOT need to live in any particular country to join us in increasing awareness of endo!

Do you use Facebook? Twitter? If you're on twitter, please code your endo-related tweets with #endo at the end of the message!

There's lots to do!

Read my blog for some ideas!!

:) :) :)

Jeanne

foxywaitingroom said...

Jeanne, once again I learn great things by coming to your site. I've added Fighting Fatigue to my blog roll.

Best,
Foxy

endochick said...

Posted it on my blog! Check out the post I did for the gear up! It's like we are running our own mini PR firm for Endo Jean. Isn't this fun! All we can do for the cause!

Yaya said...

With every new article about endometriosis my stomach does a flip with excitement for the awareness being created toward endometriosis! (now if only pediatricians would learn a thing or two...)

Yaya said...

Oh and this is why the whole "Lacey Schwimmer" thing really really bothers me:

Here she is claiming that she had endo without proper diagnosis and she needed to take 2 days off of the show and then boom she was fine and magically back to doing everything. So then people in the world are thinking "oh, endometriosis is no big deal, you just rest for 2 days and you're fine!" Umm...NO! That is not it AT ALL! So she thought she was raising awareness but she was really making it worse and giving the public false information about the world of living with a chronic illness.

Jeanne said...

Foxy,

Hi! I'm glad you liked the link!

I've had this site in my blogroll for a long time but have neglected my non-endo blogging topics lately due to sheer lack of time! :(

So this post gave me a perfect chance to plug a site that's an old favorite of mine and plus endo awareness at the same time!

Since I have fibromyalgia myself... and since this has a been a BRUTAL winter for it, I was happy for the chance to send traffic over Sandy's way! She writes a great blog!

It's always nice to see you, Foxy.

Endometrioisis Awareness Month, here we come!!!!

Jeanne

P.S. Foxy, do you have a twitter account?? If so, please use this symbol at the end of all endometriosis-related messages you send:

#endo

If you have twitter, let me know so that I can follow you...

Jeanne said...

Endochick,

You're cracking me up! I haven't been able to read your blog post yet because of my ongoing computer problems but I obviously will do so ASAP.

Thanks for spreading the word about this link. It's a good one for posting on Facebook and spreading all over the place to get people's attention for Endometriosis Awareness Month.

I have been VERY busy on TweetDeck today and I personally waded through every single message that was code with #endo! There were many (including yours)!! It's catching on!

I should note that TweetDeck kept working when every other application crashed or locked. TD is amazing everybody!! If you don't have it, now's the time to do so because it makes re-tweeting our endo tweets with #endo on them a breeze. You can install it for free. Just Google it... that's what I did.

We need to retweet that Ohio State University Medical Center quote like crazy (the quote about endo being more common than AIDS and cancer). That is a STARTLING statistic that will get people's attention and it's coming from OSU, which is highly respected! GOOD FIND on that link!!

I haven't been able to access my blog all day. If it loads on my screen at all, it locks up or the blog posts are missing. VERY frustrating!

I don't want PR for me. I want ENDO to have PR!

Whatever it take to get media attention on ENDO FACTS, let's do it.

We're making progress at getting attention for endometriosis!!

We have people re-tweeting our #endo messages on twitter now!

We are getting re-tweets from Rosalind Joffe, a published author on chronic illness!

We need to capitalize on this and keep re-tweeting such messages all month!!

Any PR we can get for endo, now is our chance! The momentum is rolling now. We need to capitalize on it aggressively.

According to "Mr. Tweet" (a twitter program), the biggest twitter trend now (by far) is called Follow Friday. We need to use Follow Friday to promote endo!

On Fridays in March, just tweet the endo bloggers you wish to promote and then put #followfriday at the end of the message. You can fit several in a tweet.

For example, my tweet could read:

Follow @endochick & @momtojake on Endo Aware Month #endo #followfriday

Haven't checked to see if that would fit but you get the idea.

Follow Friday is REALLY popular on twitter so let's use it!!

Yes, all we can do for the cause!

Jeanne

P.S. I think that link allowed for comment posting. (I'm getting them all mixed up at this point). If so, don't forget to post a comment there with your blog address under your signature. :)

Jeanne said...

Alicia,

Yes! I am equally excited with all of the articles that are popping up! :)

The endometriosis awareness IS increasing!!

I STRONGLY agree with you that pediatricians need to be educated about endometriosis. My endo began at age 13. From all that I've read and heard from many, many women... I know this is not an unusual age for endo symptoms to crop up.

I actually talked with my daughter's pediatrician about endometriosis face-to-face a couple of years back.

I agree!!!!!!!!!!!!!!!

Jeanne

Jeanne said...

Alicia,

Like you, I have grave concerns to this day about the aftermath of the "Dancing with the Stars" media blitz on endometriosis since both dancers announced having endo without having had it diagnosed by a laparoscopy.

This thing never seems to die down. (Read on)...

Julianne Hough went on to have a lap and was diagnosed by that lap with endo. Lacey Schwimmer, on the other hand, was quoted in numerous interviews as having said she had NOT had a laparoscopy. Therefore, who knows if she indeed has endometriosis?

Readers, Alicia and I just found a major new website that lists Lacey Schwimmer as a celebrity who is an "endometriosis survivor".

Yes, dear readers, the Dancing with the Stars commotion may be about to get re-ignited.

Like Alicia, I have heard interviews of Lacey Schwimmer claiming that she has endometriosis while stating in the very same interview that she has not had a laparoscopy.

I have no way of knowing if she has since had a laparoscopy. I'm not her doctor. I do know that her endometriosis announcement a few months back was not based on a laparoscopic surgery diagnosis.

If you read the websites for the Endometriosis Research Center and the Endometriosis Association, laparoscopy is the definitive method for diagnosing endometriosis.

The confusion in the endo community following Lacey's comments in the media which implied that a simple office visit was how her endo got diagnosed was immense.

I have no doubt that she was repeating what her doctor told her. It is not her fault if her doc gave her misleading info.

Unfortunately, the statements she made to the mass media about her condition caused confusion for many.

I don't know how many days she took off the show but I do know that she finished out the season... with the public left to think that her endometriosis (if that's even what she has) was not a big enough deal to keep her from a strenuous, active dance contest that's tough on the body.

I agree with Alicia that the public could easily conclude that endo is "no big deal" as they watch her wonderful dancing on the show right after she has told the world she has endo.

While I don't think she intentionally spread misinformation, I do believe her media interviews did more harm than good by adding to the confusion of HOW endo is diagnosed.

I agree with Alicia that it's most likely that Lacey intended to raise awareness for endometriosis; I agree with Alicia that Lacey Schwimmer's comments to the media may well have inadvertently done more harm than good.

I have blogged about Julianne Hough and Lacey Schwimmer at length and readers may feel free to go through my archives and/or search field to read these emotionally charged posts.

I agree that the multitude of Lacey Schwimmer articles that came flooding out a few months back really made the waters more murky for endometriosis patients and their loved ones.

It may also have caused confusion for those endo patients who have yet to be officially diagnosed. Proper diagnosis matters!

PLEASE, read this important post written by my friend Endochick. It makes a compelling case for the importance of getting a proper diagnosis rather than jumping to conclusions! Her sister's cancer could have been misdiagnosed as endo... Read it here:

http://endochick.wordpress.com/2008/11/13/dancing-with-the-stars-endometriosis/

So. A new website has launched. It's a large site with reputable links to Endometriosis Association, Mayo Clinic, etc. It also has a blogroll labeled:

"Survivors Say: Best Endometriosis Blogs for Now"

There are 2 blogs they have listed there. One of them is mine.

While I'm flattered that they included my blog in their list, I was dismayed to scroll down and see the list of celebrities listed as "endometriosis survivors".

Here's the kicker. Lacey Schwimmer is listed as an "endometriosis survivor".

{{Big sigh}}

Alicia and I exchanged emails about our concerns that this site lists Lacey Schwimmer as an "endometriosis survivor"... when it's unclear as to whether she even has endo at all.

So, after gathering my strength for a couple of days... I finally contacted the new site about this concern.

I wanted to thank them for including my blog and give them positive feedback on the parts of the site I saw that DO look good.

I also felt COMPELLED to ask them if they'd consider leaving Lacey Schwimmer off of their "endometriosis survivors" list.

I'm not sure how this request will go over but I HAD TO ask!

So, I posted a comment on their site. (I had to join their site to place a comment). It went into comment moderation.

I'll purposely not list the name of the site here (not at this time anyway) in order to give the site owners an opportunity to address my concerns.

Below is the letter I posted on their site where Lacey is listed as an "endo survivor". We'll see what they do in response to my comment below.

As Alicia pointed out in an email to me today "SOMETHING MUST BE DONE" about this business with Lacey on the list.

Sooooo, you'll probably hearing more about this issue, regardless of what response (if any) I get from the site that listed Lacey.

Let's hope they will remove her name from this site. The site looks promising in many ways, with this exception.

Here's what I posted on this new site for endo (a huge site):

----

Hello!

I recently noticed traffic from this site hitting my endometriosis blog and came over to check it out.

There is a great deal of information listed on this site and I look forward to looking through it all. I have not yet had the opportunity to look through all of it... as there is quite a bit of data to look through.

One thing that jumped out to me right away, as an endometriosis blogger, was your blogroll.

I see that you have my blog listed as one of two in your "Survivors Say: Best Endometriosis Blogs for Now" section.

Thank you! I am very flattered that you have included my blog as a resource for women and girls with endometriosis (and their loved ones).

I am 40 years old and my endometriosis symptoms began at age 13. I went undiagnosed until my first laparoscopic surgery at 23 years old.

Proper diagnosis is extremely important!! Endometriosis can easily be misdiagnosed.

Since endometriosis and cancer can be confused without proper testing/surgery, it's crucial for patients to seek appropriate medical attention and to get an accurate diagnosis.

The consequences of misdiagnosis can be dire. One of my fellow endometriosis bloggers wrote an outstanding article about this:

http://endochick.wordpress.com/2008/11/13/dancing-with-the-stars-endometriosis/

Several months ago, my fellow endometriosis bloggers and I had our hands full, to say the least, when Julianne Hough and Lacey Schwimmer announced that they each have endometriosis.

There was lots of buzz within the endometriosis community at that time due to a great deal of national media attention on the illness. Unfortunately, there was also confusion.

Julianne Hough announced her endometriosis diagnosis on Dancing with the Stars the night before she had laparoscopic surgery which did diagnose endometriosis.

Laparoscopy is considered by the Endometriosis Association and Endometriosis Research Center (see their websites) to be the definitive means of diagnosing endometriosis.

While Ms. Hough did go on to be diagnosed with endometriosis in her surgery, her announcement of it prior to surgery caused confusion in the endometriosis community.

I have written about this extensively on my blog.

I know nothing about Dolly Parton's health history one way or another. I have heard her name and endometriosis mentioned in the same sentence but have no way to verify whether she does or doesn't have the illness. (I'm unaware of any interviews she's given about endometriosis). So whether she has endometriosis or not may be something only she and her doctor know. I really don't know.

Here is what I'm very concerned about... Lacey Schwimmer is listed in the "famous endometriosis survivors" section but as far as I know she has never had a laparoscopy.

I have read countless interviews of Lacey Schwimmer. While she may have had laparoscopic surgery since she announced her endometriosis months ago, it hasn't hit the mass media like her announcement did.

Even if she has gone on to have a diagnosis of endometriosis via laparoscopy, it doesn't change the fact that her press interviews at the time where she announced her condition were confusing and misleading to the public.

The dozens of interviews I read indicated that she had not had a laparoscopy performed and implied that it wasn't necessary in her case (relative to Julianne Hough's case).

Laparoscopy is necessary to diagnose endometriosis in the first place. It is then necessary, for many women, to remove misplaced endometrial tissue subsequent to the initial surgical procedure.

To imply that it's optional to get surgery when the disease has not been yet confirmed by a laparoscopy is misleading to the public and confusing to new patients or women/girls who have yet to be properly diagnosed.

At this moment in time, laparoscopy is the definitive means for diagnosing endometriosis. Therefore, Lacey Schwimmer may or may not even have endometriosis at all... based on her own interviews.

She announced that she has endometriosis WITHOUT having had a laparoscopy.

Laparoscopic surgery is the means for diagnosing endometriosis according to the Endometriosis Association and Endometriosis Research Center.

Whether Lacey Schwimmer has gone on to have a laparoscopic surgery since all of the press surrounding her endometriosis announcement, the fact is that she was not diagnosed with endometriosis before making her announcement about having endometriosis to the mass media.

I'm concerned that including Lacey Schwimmer's name in your endometriosis survivors list may do more actually harm than good since their is already public confusion about her announcement of an endometriosis diagnosis WITHOUT the benefit of having a laparoscopy on which to make that diagnosis.

I would appreciate it if you'd consider possibly taking Lacey Schwimmer's name off of the endometriosis survivors list in light of the fact that she does not have a medically confirmed case of endometriosis... to my knowledge. (If she has had a laparoscopy that has confirmed she has endometriosis, one would only hope that the media would give as much attention to these facts as it did to her initial announcement).

Women and girls with endometriosis struggle daily due to the myths and confusion associated with this disease.

As we head into Endometriosis Awareness Month tomorrow, one can only hope that we'll be able to secure improved press coverage on the topic of endometriosis in the future.

Thank you for providing a forum for women and girls with endometriosis and including my blog in your "Survivors Say: Best Endometriosis Blogs for Now" section.

Best regards,
Jeanne (of "Jeanne's Endo Blog")


Jeanne's Endo Blog is located at: http://www.endendoat.blogspot.com/

Endometriosis awareness online petition: http://www.gopetition.com/petitions/endometriosis-awareness-understanding.html


------

Let's just hope this large, new, commercial website does the right thing and removes Lacey Schwimmer's name from its "endometriosis survivors" list.

The site looks promising. I just can't stand by and look the other way regarding this Lacey Schwimmer issue. I just cannot.

Jeanne

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