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Showing posts with label letter-writing campaign. Show all posts
Showing posts with label letter-writing campaign. Show all posts

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.

2/23/2009

"Jeanne Endo Blog" Honors Donna Jackson Nakazawa, Author Of The "Ill In A Day's Work" Article In The Feb 2009 Issue Of More Magazine!

I'm so happy; I feel like I just won the lottery!

I just found a blog for Donna Jackson Nakazawa!




She is the writer of the phenomenal chronic illness article that launched our endometriosis awareness campaign back on February 16, 2009:

Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!



Donna Jackson Nakazawa is also the author of a book: "The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance -- and the Cutting-Edge Science that Promises Hope"

Upon discovering her blog, I felt compelled to write her and thank her for that amazing article referenced in my 2/16 post:

"Ill In A Day's Work"

Here's my letter to Donna Jackson Nakazawa, posted on Donna's Blog
--->
Hi Donna!

I am SO happy I found this site! If your ears are ringing it’s because I have been singing your praises on my blog!

Your “Ill in a day’s work” article for More magazine’s February 2009 issue is PHENOMENAL!!! I cannot say enough about it. I’ve written on my blog about it! I posted my first vlog (video) entry and even held up your magazine and just plain raved about the article.

Having numerous chronic illnesses, many of which are autoimmune conditions… I LOVED your thorough article!

The first chronic illness to hit me was endometriosis, at age 13. I’m 40 now. So I have dealt with endo for 27 years.

In that time, I’ve participated in local (in person) endo support groups since 1992 (after my diagnosis, which took TEN years from onset of symptoms). I started an endo group, as a volunteer support group leader, in my current community in 2001. I started my blog last June.

My career went up in smoke several years back. I was far too sick to function.

I have heard hundreds of women’s stories… Not just with endometriosis but with others illnesses (many connected in studies to endo)… For example, fibromyalgia, IBS, interstitial cystitis, Reynaud’s Disease, multiple chemical sensitivity (MCS)… [I have all of the above diagnoses... and other conditions].

My blog is about chronic illnesses. Mariela Azcuy of Meredith Corp. has emailed me publicizing your chronic illness article after seeing my blog.

Since then, I have organized a letter-writing campaign to find a way to get endometriosis featured in the national media. It affects 89 MILLION women and girls. It can affect careers, marriages, fertility, severe chronic pain… It has a huge impact on patients and their families.

I have had 7 surgeries for endo. I have too many other illnesses to count at 1:40 am when I should be asleep…

I just want to thank you for your More article so much!!! I literally held up the magazine in my vlog post on 2/16 on my blog… and asked people to buy it for YOUR article.

I would be honored if you’d take a moment to check out my blog post *about your article*!

I don’t normally post links in blog comments and I’m NOT trying to be spammy but I’m listing the specific link that will route you to the More magazine post with your article:

http://endendoat.blogspot.com/2009/02/jeannes-endo-blog-how-more-magazines.html

If you read the blog comments section, you’ll see where I talked about the fact that I would “jump up and down” if we in the endo patient community were fortunate enough to have a writer well-educated about chronic illness (such as you) write a feature on endo!

Endo affects 89 MILLION women & girls. That’s more than breast cancer!

I would be deeply honored if you’d read/view my blog entry from 2/16 about your article.

THANK YOU (!!!) from the bottom of my heart for that More article! Looks like I need to add your book to my very large reading list. There are never enough hours in the day for me to read my mountain of books.

Take care and I’d be thrilled and honored if you check out my blog.

Also you can email me directly at:

endendo [at] frontiernet [dot] net

I just wrote it out to minimize spam. I learned awhile back that the Google robots and such find online posted email address but this helps. Just remove the spaces, replace [at] with the @ sign, and replace [dot] with a period… and delete the spaces.

I very much look forward to connecting with you!

Jeanne


Please join me in thanking her for this outstanding article and please also join me in asking for her assistance in helping us find a national voice for endometriosis, which affects 89 MILLION women and girls worldwide... more than breast cancer.

Let's thank her on her blog and let her know how much we appreciated her article on chronic illness! Let's let her know that we would be deeply honored if she'd consider writing an article about endometriosis!

In honor of the upcoming March Endometriosis Awareness Month, let's make our voices heard and spread awareness!

Related links:


Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

Friday, February 20, 2009 "Jeanne's Endo Blog": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!


Thank you.

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

2/20/2009

"Jeanne's Endo Blog": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

This post is a follow-up to:

Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

If you haven't yet read the above post, I encourage you to do so.

Following that post, Endochick and I discussed how we can capitalize on the momentum we have going to get people writing letters for endometriosis awareness. I asked Endochick if I could reprint her amazing letter to Mariela Azcuy (see Ms. Azcuy's contact info later in this post):

Endochick graciously agreed to let me print her letter to Ms. Azcuy. Whether this letter was written to Ms. Azcuy or to anyone with media contacts, we believe that posting sample letters such as this will inspire others to write their own letters regarding their personal journeys with endo!

March is Endometriosis Awareness Month. We're ramping up now to, hopefully, make a big splash next month regarding endometriosis awareness!

I urge you to read Endochick's post from today:

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

Her post about this topic on her blog gives much helpful detail!! So please go check it out!!

Now, it is my pleasure to present Endochick's letter. Again, I urge you check out Endochick's entire post about the topic of letter-writing to create endo awareness... especially with Endometriosis Awareness Month around the corner in March!!

As promised, here is the example of Endochick's letter to Mariela Azcuy. Please remember that her work on her blog is copyrighted and that the following letter is therefore under copyright protection (as is my writing on this blog).

Endochick says,

"You may use this example as a reference, and I hope it inspires you".



Endochick

Here's Endochick's "Sample Letter":

---

Mariela Azcuy
Senior Associate Director of PR
Ladies’ Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017

Dear Ms. Azcuy:

I am writing on behalf of the 89 million women and young ladies who suffer daily from endometriosis. In North America it’s estimated that this number is 5.5 million strong and growing every year. Many of these women go undiagnosed for years and then once diagnosed are either under or improperly treated. And even worse, Ms. Azcuy, endometriosis sufferers are marked with a stigmata that haunts them, often before they are even officially diagnosed with the condition. Society views many of us as drug seekers, doctors withhold needed medication, and our co-workers and bosses see us as attention seekers.

But let me first commend your corporation for its in-depth coverage on chronic illnesses. While these illnesses do warrant a need for more press time, one chronic and often time debilitating illness is not getting it’s due coverage in the media – endometriosis. This past fall, television viewers received a mediocre education on endometriosis via the coverage given to Dancing with the Stars’ Julianne Hough and Lacey Schwimmer’s diagnoses’.

The coverage by the media glossed over one vital fact in how endometriosis is diagnosed: the only definitive way to diagnose endometriosis is to perform a laparoscopy. According to the Endometriosis Association, “diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient makes better treatment choices.” The Endometriosis Research Center agrees: “Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive.”

The scary fact is that there are doctors diagnosing patients not with “probable endometriosis” but with “definite endometriosis” based on nothing more than their symptoms. The diagnosis from one to the other allows the doctor to prescribe a whole host of potent medications; medications that should be reserved for women with confirmed endometriosis that doesn’t respond to lesser hormonal preparations. Yet, I have personally seen this happen with two women who have contacted me via my blog. They hadn’t even had a laparoscopy, so their doctors can’t even be sure they in fact do have endometriosis! It was believed that my own sister had endometriosis until a laparoscopy found her pelvis free of the disease. A pap smear, on the other hand, found the cause of her excessive bleeding: cervical cancer.

There are too many conditions that can mimic endometriosis - diverticulitis, infection, ovarian cysts, pelvic inflammatory disease, irritable bowel disease, STD’s, vaginitis, and even ectopic pregnancy. Would it be ethical to give anti-cancer drugs without first doing an MRI or a CT scan to look for a tumor? Yet, there are doctors subjecting women to the effects of menopause, severe migraines, moments of rage, and a decreased sex drive when an outpatient, surgical procedure can determine whether there is even a need for the medication!

As I hope you can see there is an urgent need for appropriate, in-depth media coverage on endometriosis. My fellow endometriosis and chronic health bloggers congratulate your corporation on the wonderful coverage you’ve given to the chronic illness community, now we implore that you do the same for the endometriosis community. Please help me and my fellow endometriosis bloggers to help the 89 million women and young ladies feel that the pain they feel is not in their minds, and that they are not alone. Help us to give endometriosis the voice it deserves in the media.

Sincerely,

Endochick (Put your real name)

Blog:
Endometriosis: The Silent Life Sentence

------

My hope and intention in the coming weeks is to post more sample letters to inspire YOU to write your stories to get the facts about endometriosis into the media once and for all.

Please keep those letters rolling into Ms. Azcuy and I'd really appreciate if you can copy me on them if at all possible!! If you copy me on your letter to the press (Ms. Azcuy or otherwise), please indicate whether you'd be comfortable with me posting your letter as a sample to inspire others to write in to support accurate media coverage of endo!

The response to the vlog/blog post has been fantastic. Please keep those letters and petition signatures rolling in. :)

Thank you!

This post is cross-posted with Endochick's post:

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

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

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