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Showing posts with label Meredith Corp.. Show all posts
Showing posts with label Meredith Corp.. 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.

3/01/2009

'Jeanne's Endo Blog': Sample Letter To The Media From "My Journey With Endometriosis"

My Journey With Endometriosis is one of my favorite blogs. When I asked readers to contact Mariela Azcuy, Senior Associate Director of PR for Meredith Corporation (see related links at the bottom of this post for much more information), I was copied in on the following fantastic letter! With permission, I am reprinting this letter here as a "sample letter". Some of you may recall seeing a previous "sample letter" posted on my blog. (That one was written by Endochick).

These sample letters are well-suited for contacting others in the media besides Ms. Azcuy as well. These letters are being shared to inspire you to write in with your own story and your own personalized request for coverage of endometriosis facts in the media.

This particular letter was sent to Ms. Azcuy and I was copied. It is a fantastic glimpse inside the tumultuous world of one endometriosis patient. Let's hope the media is listening. (I should note here that Ms. Azcuy was kind enough to acknowledge that she did receive this letter. We appreciate Ms. Azcuy's assistance in getting our requests to the editorial staff and health writers at Meredith Corp.)




Dear Ms. Azcuy,

My name is _______, I’m 28, and I am living with stage IV endometriosis. I read a copy of the article from More magazine, which was forwarded to me by Jeanne from Jeanne's Endo; and, I just wanted to write to express my interest in endometriosis being covered in a more factual manner than it has recently in main stream media.

My case is a little different from most that suffer. The time to diagnosis is something around an average of 9 YEARS. I cannot imagine having suffered that long without answers! My disease actually presented itself in GI manifestations (a few months after coming off birth control for the first time in 9 years), making it pretty tricky to pinpoint a cause. I was bounced from appointment to appointment and medication after medication. After a few months of the back and forth, I was sent for a CT scan because it was suspected that I had appendicitis. At this point I was very ill... I lost about 20 lbs in a month or two because of my pain and contrast GI symptoms. I also noticed during this time that my monthly cycle was also becoming unbearable.

My CT, luckily, showed a large cyst on my right ovary, and some colitis. I say luckily because endometriosis does not usually show up on a scan. But, because I had a cyst…I was finally headed in the right direction. Less than a month, and three ER visits later, I had my first laparoscopy. My case was so bad that when they put the scope in to examine my abdomen, all they could see was one giant mass-all my organs were sticking together. They attempted to get what they could while I was in surgery, but, unfortunately a lot of the colon adhesions had to be left behind for safety reasons.

After diagnosis I was ready for treatment. But, I soon discovered…there was no real treatment for this disease. I took a medication called Lupron Depot which put me into a medically induced menopause. Believe you me... at 28, that was pretty traumatic. I knew the drug would only be a temporary fix, and, I took a big risk taking it. SO many women have had some seriously ill effects from this drug…but, I needed relief. Also, I wanted a chance to conceive.

My husband and I had been trying for some months prior to my diagnosis. After surgery, I learned that we had a high likelihood of having a difficult time conceiving. We sought experience from a reproductive endocrinologist (RE) after I was done with the Lupron. We have been trying now for almost 2 years with no success, even now with some fertility drug assistance.

In 4 weeks now I am facing my 2nd surgery in 13 months. I have another cyst on the same ovary (called an endometrioma, and, unfortunately their nature is to grow back... no one knows how fast or furious). It is now 6 CM, and, the time has come to remove it. I have a team of two specialists this time around-an RE and a GI surgeon. The goal of this surgery is to get as much of this cyst with as little of my ovary as possible, and, to hopefully clean my colon adhesions without having to have a resection. After this surgery, my husband and I will be going through IVF.

When I got married 3 years ago, I never imagined the “In sickness” part of the vows would happen so quickly. It has been a very stressful time for us in our early married years. But, we have overcome the trials and tribulations, and, I know we will come out of this better, stronger people. I know some people are not as lucky as I am to have such a wonderfully caring and devoted husband. I know endometriosis can ruin lives and marriages.

I am reminded constantly of my battle with endometriosis. My most severe symptom, still, is constant nausea. I’ve learned to cope finally, but, it’s been difficult. And, some days are easier than others.

Endometriosis is such a misunderstood illness. I must say, before my diagnosis, I thought it was a pain disorder. It is so much more about pain. It’s physical and emotional pain. It’s the pain of knowing that I may one day not be able to have my own children…to look into the eyes of a child and know it’s mine. It’s the pain of wondering if I am going to have to have surgery every year... or, wondering when it’s going to come down to a hysterectomy (even though this is not a recommended treatment). It’s the pain of wondering, what’s next in this “saga” of a disease.

I am hoping that you would consider doing an article on endometriosis for a future publication with the intent of getting the facts about the disease widely distributed. It is my hope that one day, young women may not have to go several years without having a name to call their illness, and won't have to go to several different doctors and being made to feel that what they are experiencing is "in their head" before they find hope for relief. It is my hope that there would be a call for more research and more intense study in the medical field. I would invite you to help in making this a reality.

Best Regards,

____________

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Thank you to My Journey With Endometriosis for giving me permission to share this letter in an effort to inspire others to write in requesting endometriosis coverage. Her positive attitude despite such adversity is inspirational!!

Here is Ms. Azcuy's contact information if you wish to request mainstream print media attention for endometriosis facts:

Mariela Azcuy
Senior Associate Director of PR
Ladies' Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017
212.551.6955

mariela.azcuy@meredith.com


Related links:

Link 1 (VIDEO):

VIDEO: 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!

Link 2:

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

Link 3:

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!


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

2/16/2009

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!

More magazine has a superb February 2009 article!!!! Read on...

Finally! I am posting my first vlog, as I have wanted to do for months. I'll be very anxious to hear your feedback. Some of you may ask, what's a vlog?
Here is a description.

My first vlog entry talks of my intense desire to get the facts about endometriosis featured in mainstream media magazines. I'd like to make the hundreds of voices on our
Create Endometriosis Awareness and Understanding petition heard!



Video is copyright © 2009 Jeanne's Endo Blog. All rights reserved.

As promised, here is the contact info for writing to request endometriosis coverage:

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

mariela.azcuy@meredith.com


Please first join me in THANKING Ms. Azcuy for sharing the February 2009 More magazine article, "Ill In A Day's Work"!! It is phenomenal!!

In addition to thanking Ms. Azcuy for sharing the amazing article linked above (make sure you tab through and catch all 7 screens for this article), I wanted to request that one or more of her magazines consider printing a story on endometriosis.

With 89 MILLION women and girls with endo worldwide, we need to get the facts about endo out to the public, to undiagnosed patients in need of guidance on how to get diagnosed, and to patients to let them know they are NOT alone!

PLEASE HELP CREATE ENDOMETRIOSIS AWARENESS & UNDERSTANDING BY DOING THE FOLLOWING:

(1) Sign the awareness petition linked above. Ask your friends and loved ones to sign it too. ANYONE wishing to support endo patients may sign it. The more people sign, the better our odds at getting endo featured. Write to Ms. Azcuy requesting media print coverage of endometriosis. Time is of the essence!

(2) If you have a blog, please blog about this topic and link back to this blog post!

(3) If you don't have a blog, please be persistent when asking friends and loved ones to sign the petition. (The petition has been emailed to Ms. Azcuy already but let's get more names). Also, you don't need a blog to write to her asking for endo coverage! Frankly, this could be our chance to finally put that petition to use. Too many women are suffering in silence.


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89 MILLION women & girls worldwide with endo... the numbers are just staggering)!

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Thank you for your support! Let me know what you think of my first vlog, please!!

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!