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3/03/2009

'Jeanne's Endo Blog': My Letter To Mariela Azcuy of Meredith Corporation...

This is a letter I emailed to Mariela Azcuy yesterday. It was a follow-up letter regarding our letter-writing campaign to Meredith Corp. requesting media print coverage for endometriosis FACTS. Please keep writing to Mariela Azcuy!

Ms. Azcuy,

Today is Day 2 of Endometriosis Awareness Month. We are very busy!

I would like to take a moment to express my deep gratitude to you for passing along our pleas for coverage of endometriosis facts in national print media! Your emails back to me and others (I know you had written back to __________, for example) give us hope and let us know that our letters are being routed to your editorial staff. Your kindness in taking the time to acknowledge our efforts and requests for factual coverage of endometriosis gives us hope!

As Endometriosis Awareness Month kicks into full gear, I am continuing to publish “sample letters” on my blog to inspire more endometriosis patients to come forward with their stories. I’m not sure how many letters you have received about endometriosis coverage besides mine, ____________ and __________'s but those are the ones I’ve been copied in on.

Endometriosis affects more people than AIDS or cancer! (Source: The Ohio State University Medical Center website):

Statistics: Gynecological Health at a Glance

The above statistic shocked me. You’d never know endometriosis affects more people than AIDS or cancer by reading what is currently available in the mainstream media.

With 89 million women and girls affected, endometriosis deserves media attention presented in a factual manner. Too often, myths about endometriosis are disseminated in the media… causing confusion to the public and for patients. After reading the More magazine article, “Ill in a day’s work”, by Donna Jackson Nakazawa... I am extremely excited at the potential for such a high quality article to be printed about endometriosis. So are my fellow endometriosis bloggers. We just loved that article on chronic illness!

Women and girls with endometriosis deserve for their illness to have basic awareness and understanding. So often, the general public has neither and the media can help with this problem immensely.

Our petition for endometriosis awareness has been picking up steam and has more signatures than when I sent it previously. If you take a peek at the heartbreaking comments on it, pleading for awareness and media coverage of this devastating disease, you start to get a glimpse at the profound impact endometriosis has on patients AND their loved ones. We now have 247 signatures and counting.

Sign our endometriosis awareness petition here!

You had indicated that More magazine’s target audience is women ages 40 and up. Having recently turned 40, I could very easily write a piece to appeal to this demographic. It would be my honor and privilege to do so and More would have a free article.

You had indicated that Ladies’ Home Journal would be looking more for stories on prevention and wellness. Having lived with endometriosis for 27 years and talked with hundreds of endometriosis patients, having participated in local endometriosis support groups since 1992, having started an endometriosis support group in my area in 2001, and having written my blog since 2008, I could easily write an article with a prevention and wellness angle. While it may not be possible to prevent endometriosis from expressing itself in those genetically predisposed to it, I could certainly write tips for early intervention, early diagnosis, and aggressive management of the disease with the goal of preventing things like loss of fertility or quality of life. By taking charge early on and learning to advocate for themselves about endometriosis, by finding the right doctors to manage the disease, and by learning about the wide variety of options available above and beyond Traditional Western Medicine (“drugs and surgery”), women have the power to manage their symptoms more proactively than if they passively wait for their doctors to make their healthcare decisions for them. I could write an article about prevention in the sense of “preventing symptoms from escalating out of control as easily”. As far as wellness, there are countless ways I could approach writing about endometriosis with a wellness angle to the article. Again, I would be extremely honored to write such an article and Ladies’ Home Journal would have a free piece to print.

If I sound fixated and passionate about endometriosis, it’s because I am. After 27 years with endometriosis and after hearing countless heartbreaking stories from other women who have been misdiagnosed, under treated, have had a delayed diagnosis (average diagnosis is 9.9 years after onset of symptoms), and have been treated like (or even told!) by doctors that their symptoms were in their heads, women are understandably frustrated that this illness does not get factual media coverage.

Endometriosis affects more people than AIDS and cancer! Shouldn’t we be hearing more about it in the media? The societal taboos associated with an illness that involves (for some endometriosis patients) menstruation problems seems to be part of the problem. My philosophy is that if mainstream media magazines can have detailed articles about testicular cancer and prostate cancer, why should the topic of endometriosis be taboo? This is a serious medical condition.

Breaking these societal taboos is key to getting endometriosis facts out to a public that desperately needs information. Sadly, too many gynecologists are not highly skilled at recognizing and removing endometriosis. This leaves women shuffling from doctor to doctor in search of relief and answers.

We appreciate your ongoing help in routing our letters to the editorial staff at Meredith Corporation. I will continue asking my readers to contact you with their requests for endometriosis coverage. The 89 million women and girls with endometriosis deserve their voices to be heard.

Thank you so much for all of your support and assistance!

Best regards,



Related link:

Sunday, March 1, 2009 'Jeanne's Endo Blog': Sample Letter To The Media From "My Journey With Endometriosis"

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

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

2 comments:

Natalie said...

Hello,
I have been doing extensive research online trying so hard to find someone like you. This is amazing and I am so thankful I found you. I will probably leave you another or more comments later, I just wanted you to know that you are really appreciated.

Natalie

P.S. I signed

Jeanne said...

Natalie,

Hi! I'm so glad you found my blog! I just checked out your profile and I see that you are a brand new blogger. I just signed up to be your first follower! :)

I'm really glad you like this blog. I look forward to more comments from you. :)

I appreciate your kind words! :) You made my day!

Jeanne

P.S. Thank you for signing the petition!! That's the spirit! :)

Have a wonderful day!! :)

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!