Our campaign is making progress! If you have not seen the related posts preceding this from 2/16/2009, 2/20/2009, and 2/23/2009... please see links at the end of this post so this one will make more sense.
Welcome to my second vlog!
THANK YOU you for the warm welcome on the first one... the most comments I've ever had to one blog post!
The video clip below will update you on our endometriosis awareness campaign status: our awareness petition, our letter-writing campaign, our variety of efforts to seek media attention regarding endometriosis facts, and our preparation for Endometriosis Awareness Month.
Video is copyright © 2009 Jeanne's Endo Blog. All rights reserved.
In preparation for Endometriosis Awareness Month... I am asking endometriosis patients, bloggers, and anyone else interested in the endo cause to please contact Donna Jackson Nakazawa (contact info for her blog address is in link below).
Also, would all twitter users please include this symbol at the end of all endometriosis-related tweets?
#endo
You may have noticed other bloggers using similar hashtags...
Such as "The Spoon Lady" from:
But You Don't Look Sick?, written by Christine Miserandino.
Christine uses the symbol: #spoonie
By using #endo, we will be able to search twitter for endo-related tweets. So will anyone who uses twitter and makes use of it's search function.
Granted, with a 140-character limit per tweet, sometimes it may be a bit challenging to fit the extra 5 characters. However, this will code enable us to sort/search for the tweet messages we need more quickly & effectively and it will catch the attention of others to the endo cause.
If you haven't already done so, please comment on Donna Jackson Nakasawa's blog (see link below for her blog and info about contacting her! :)
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!!
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.
Showing posts with label sample letters. Show all posts
Showing posts with label sample letters. Show all posts
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".
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!
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.
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