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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":

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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

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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.

6 comments:

Yaya said...

Thanks Endo Chick! I'm gonna work on my letter now!

Jeanne said...

Alicia,

Doesn't Endochick rock??

I honestly believe that if the whole lot of us endo bloggers works together as a team going into Endometriosis Awareness Month in March... that maybe all of our letters will get the attention of someone with the power to feature an accurate, meaningful story in the media on endometriosis for a change!

Jeanne

endochick said...

Thanks so much for posting this as an example on your blog and linking it back, Jeanne. I hope it helps to inspire more letters! I have a feeling this campaign will be a hit - our voices will be too loud not to be heard. lol

Jeanne said...

Endochick,

Thank YOU!

I believe posting our sample letters WILL inspire more letters!

I like the sounds of this (below)!!

"our voices will be too loud not to be heard"

Jeanne

Coming2Terms said...

This is a great letter and great idea! Thanks to you both for advancing an important cause.

Jeanne said...

Coming2Terms,

Thanks for the feedback! :)

Endochick knows how to write a letter!

Here's another post that might interest you.

It's a more direct way for us to reach the health writer mentioned in the 2/16 vlog post... because we can comment right on the writer's blog!!

How cool is that?

Endochick and I have already commented on Donna's blog.

See below...

Monday, February 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!


Thanks!

Jeanne

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