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Endometriosis Advocacy and the Media (Re-post)

I am purposely circling back to a relatively recent post and re-publishing it – not to be repetitive but because it is Endometriosis Awareness Month and some may have missed this post from last month. This is an example of a rare “success story” regarding endometriosis patients making their voices heard by the media regarding correction of endometriosis misinformation. In addition to Dr. Neal’s wonderful letter to the editor (and many others that so many of us sent in), I honestly believe that the online endometriosis awareness petition link I sent to the editor didn’t hurt matters any. If you have not yet signed the petition, please take a moment to do so now. Also, please ask your loved ones and friends to add their names in support of endometriosis patients. Thank you!

From February 10, 2010:

Today, I received excellent news from fellow endometriosis patient, Diane Neal, PhD!

One of the letters to the editor recently sent to The Intelligencer (regarding the article discussed in these prior posts Media: Endometriosis Misinformation (Edited) and Endometriosis and Media) was published today. Hers!

This is wonderful news for endometriosis patients, many of whom have been writing such letters to the editor in the last few days.

It is very heartening to know that our voices are being heard and it is exciting that The Intelligencer has printed this letter (headline titled by the paper: “Corrections in “The doctors didn’t even examine me!”)

I am writing about the misinformation provided in the article “The doctors didn’t even examine me!” by Dr. Gifford-Jones, posted on Feb. 4. As a person with very severe endometriosis and a history of ovarian cysts, I was appalled to read that Dr. Gifford-Jones thinks that (1) endometriosis can be diagnosed by a pelvic exam, and (2) the nature of ovarian cysts can be diagnosed by ultrasound.

Endometriosis and ovarian cysts can only be diagnosed by a laparoscopy. I also noted that comments on the article have been closed; hopefully this was not done because of the patients who were starting to correct Dr. Gifford-Jones’ facts. Please see, for example, the Endometriosis Association’s website to confirm the need for diagnostic laparoscopy (Endometriosis Association).

Endometriosis is a widely misunderstood, misdiagnosed, and stigmatized disease. Please do not further hinder the plight of endometriosis sufferers by disseminating incorrect information.

Diane Neal, PhD London, Ont.

The publication of this letter to the editor to The Intelligencer is excellent news because there have been so many occasions where endometriosis patients have written in to various news media outlets about errors regarding endometriosis and been ignored. This time, our voices were heard and feedback about endometriosis misinformation was printed in the same newspaper that had published errors just a few days ago. This is wonderful news!

Yesterday, in my second letter to the editor of The Intelligencer, I included the following petition. I would like to think that the petition didn’t hurt our chances of getting a letter to the editor published. That means if you signed this petition then you helped in our effort to correct the misinformation that The Intelligencer had printed about endometriosis.

If you haven’t signed the petition yet, just click the link below:

GoPetition

I think we should capitalize on this success by getting momentum going so that any time we see endometriosis misinformation in the media, we will band together (as we did in this case) and send in letters to the editor, comments to the online article, etc. This case is a model for what we can do in the future when similar endometriosis misinformation stories appear in the media.

We can make things better by working together! Thank you very much, Diane, for writing a letter to the editor that got the attention of The Intelligencer. Also, thank you to everyone who commented to the online article and/or wrote letters to the editor in this case. By working together to put pressure on this newspaper, we succeeded. The newspaper printed a correction, in the form of Dr. Neal’s letter to the editor. This is a milestone considering how many times in the past many of us have written in to various media outlets expressing our concerns about endometriosis misinformation.

Let’s use this formula in the future. If any of us sees an article that spreads endometriosis misinformation, let’s bring it to each other’s attention. Then, let’s post online comments refuting the errors if that is an option (as it was for this article before the comments were closed). Let’s also write letters to the editor. Finally, in cases like this, I plan to send the link to the online petition (as I did when I wrote my second letter to the editor this time). Let’s keep spreading endometriosis FACTS and do what we can to prevent the spread of endometriosis misinformation.

If we work together, we can improve the way endometriosis is covered in the media. It’s not going to change overnight… but I DO believe by working together that we CAN make a difference!

Thank you!

If you’d like to see the comments that were left to the original post, see this link and scroll down to the comments:

Endometriosis Advocacy and the Media


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis Advocacy and the Media (Re-post)

8 comments

1 DianeNo Gravatar { 03.08.10 at 8:46 pm }

Thanks for reposting this! ;-)

2 JeanneNo Gravatar { 03.08.10 at 9:23 pm }

Diane,

I thought it was a very good fit for Endometriosis Awareness Month. There are bound to be people who missed the post in February.

Thank you for getting the attention of The Intelligencer!

Jeanne

3 Jannie FunsterNo Gravatar { 03.09.10 at 4:36 pm }

Jeanne!!

Thank you for re-posting this!!!

Do people get diagnosed for cancer? YES!
Do they get diagnosed for kidney disease? YES!
Do they get diagnosed for everything else but endometriosis? YES!

Not saying that everyone is handling this badly. But there has to be more awareness of what endo really is and how it’s diagnosed.

Let’s refute ’til we’re blue over all of this misinformation!!

xo

4 JeanneNo Gravatar { 03.09.10 at 4:53 pm }

Jannie,

You are right! Endometriosis is a very poorly understood condition. It is under-diagnosed and misunderstood.

Hopefully we can generate some awareness by persisting in speaking up!

Here is the petition link for anyone who missed it:

Create Endometriosis Awareness & Understanding

Jannie, you are a one of a kind because you took the link and made a customized endometriosis petition button to match your blog. How cool are you?

Anyone interested in embed code to promote the endometriosis petition on your blog? If so, let me know and I’ll be happy to send it to you. Just drop me a comment on any post to let me know you’d like it and I’ll get it to you!

Jeanne
xo

5 ShaunaNo Gravatar { 03.13.10 at 6:59 am }

Dear Jeanne,

AWESOME girl!!! I LOVE that the petition has been submitted to the press…whohoooo Great job my friend!! Great post too. :)

Gentle Hugs,
Shauna
.-= Shauna´s last blog ..File Under–"And Other Fun Things Jan. 2010" =-.

6 JeanneNo Gravatar { 03.14.10 at 5:47 am }

Shauna,

Thank you! We’re getting the word out! We now have 533 signatures on the endometriosis awareness petition. ;)

((hugs))

Jeanne

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[...] If you haven’t already done so, check out this post: Endometriosis Advocacy and the Media (Re-post). It explains a case where we put the petition to use in pressuring the media to correct errors that [...]

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