Endometriosis Blog: November Is National Prematurity Awareness Month

Today I was inspired to write a post after reading an excellent article posted by Kelly Damron!

Her blog is called Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences.

I was just reading Kelly Damron's blog post regarding the fact that November is National Prematurity Awareness Month.

I didn't realize until reading Kelly's post that November 12th was National Prematurity Awareness Day because I hadn't heard about it until after the fact!

However, again, the entire month of November is National Prematurity Awareness Month

When certain conditions get more attention and research dollars than others, it's hurtful and damaging to those who have the "under researched" issues that are less talked about in public circles.

Now don't get me wrong. I'm not advocating graphic descriptions of laparoscopic surgeries at the dinner table. What I am saying is that if a bladder cancer patient can discuss his/her condition with family and friends... then patients with endo or patients with infertility/miscarriage history and/or adoption proceedings should be able to discuss their situations just as freely... if they wish to do so.

As Kelly alluded to in her blog post, relatively little attention is given to events honoring "infertility, loss, and premature babies" and that there is much more publicity given for other conditions. This simply should not be the case.

Here are my thoughts after talking with many women who have or have had infertility, miscarriages, and had premature babies...

1) Our society as a whole doesn't know how to deal with these issues. People may gave good intentions to be "polite" and to not be "intrusive". They may avoid discussing these topics for fear of upsetting couples dealing with these issues. However, this can lead to isolation of the couple and make the healing process harder for them than it would be if they felt they could talk openly about it. While patients who go through these emotionally draining and exhausting issues all have their own ways of dealing with their situations, most that I have met WANT to talk about it.

PLEASE NOTE: For open and candid discussion about infertility, miscarriages, and starting the adoption process, please see my friend Alicia's information-packed blog Yayastuff.

Alicia's candor about the wide range of emotions she has been through on her journey is a testiment to her strength and determination. Her courage is inspiring her many readers on her blog!

2) Illnesses or conditions that affect or are related to reproductive organs tend to be less openly discussed than others. For example, endometriosis is rarely brought up in casual conversation but if a person were to talk about asthma or diabetes, the conditions would/could just be discussed openly. There are people who are uncomfortable discussing issues that make them feel awkward. It has taken years for me to do a 180 degree turn from being quiet, shy, and downright mousy about my endometriosis (and other) symptoms... to being open, candid and comfortable talking about my illnesses as if they were any other. (It took me a few years to fully comprehend that I have nothing to be embarrassed about or feel awkward about. If others don't feel self-conscious discussing their conditions, why should I feel muzzled about my health issues)???

I'm not sure if my theories answer Kelly's question or not but I have seen in working with many women in endometriosis support groups that there is often a "stigma" or a level of embarrassment that women sometimes feel when discussing "taboo subjects" such as periods, cramps, hormones, etc. This is truly unfortunate.

How can we band together to make headway on these issues if people aren't talking much about it? If the people dealing with these conditions don't feel at liberty to discuss them with anyone but fellow patients, how will anything ever change for the better as far as awareness?
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Please see previous articles I have written about the other (related) awareness days and/or weeks that I heard about in time. Thanks to Kelly, I heard about awareness month in time to post about it for November!

Related articles:

Wednesday, October 15, 2008 Stillbirth Awareness and Research Act

Sunday, October 19, 2008 Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008 -- Reminder

Tuesday, October 21, 2008 Endometriosis Blog: National Infertility Awareness Week -- A Personal Story

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

Stillbirth Awareness and Research Act

This post is a re-run of a previous article:

Friday, October 3, 2008 Endometriosis Blog: H.R. 5979 Stillbirth Awareness and Research Act

The prior post was to create awareness in advance of National Pregnancy and Infant Loss Remembrance Day: October 15, 2008.

I'm posting it again today...

H.R. 5979 Stillbirth Awareness and Research Act

Today -- October 15th, 2008 -- is National Pregnancy and Infant Loss Remembrance Day.

Endometriosis patients are at an increased risk for miscarriage.

Please see the blog where I first heard about this Remembrance Day:

I Think I Hear Your Mother Calling: Tales From the Empty Homestead

The author of the above blog requested other bloggers take action as follows:

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce it's incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

Action Steps:

Step 1.

Use Your Blog to Enlist Others - Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2.

Use Your E-mail to Enlist Others - Email 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3.

Help Pass the Stillbirth Awareness and Research Act - By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

GOAL: 1,000,000 Google results on October 15th when that term is searched for. Currently, Google only returns 20,400 pages - most of which have nothing to do with the bill.

In reading about this legislation, I came across another link they may interest readers:

First Candle

A thanks goes out to Manda of I Think I Hear Your Mother Calling: Tales From the Empty Homestead. It was her blog that first brought this Remembrance Day to my attention.


Related links:

Friday, October 3, 2008 Endometriosis Blog: H.R. 5979 Stillbirth Awareness and Research Act

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

Endometriosis Blog: H.R. 5979 Stillbirth Awareness and Research Act

**** UPDATE/EDITOR'S NOTE about October 3rd post: ****
Today (October 5, 2008) I just emailed my representative regarding the H.R. 5979 Stillbirth Awareness and Research Act. If you are interested in doing the same, here is the simplest process for doing so:

(1) Sample letters to help you with guidelines on what to write plus save you time are on this website First Candle: Stillbirth Legislation Needs Your Help.

BUT it’s suggested to PERSONALIZE the letter to increase the odds they’ll read it and heed it... For example, I wrote them on behalf of a friend who has had multiple miscarriages.

(2) You'll need your full zip code (all 9 digits). Here's where you can find it if you don't know it: Search for your full zip code here.

(3) Go to United States House of Representatives. Insert your zip in the zip code fields in top left corner of the screen. This will take you to your representative. Depending on if your representative's site is well-designed or not, you should eventually be able to find a spot on their site where you can email them. That's what I did.

(4) Try not to rely too heavily on the sample email you obtained in step one. Personalize your email where you can. It'll have more impact if you explain why you're writing (i.e. personal experiences, writing in support of loved one, relative, or friend).

(5) Submit your email. That's it. It's easier than it sounds. It took me less than 5 minutes to cover steps 1-5!

*******************************************************************************
October 15th will be a busy day.

In addition to being Blog Action Day for poverty, it will also be National Pregnancy and Infant Loss Remembrance Day in the United States.

Endometriosis patients are at an increased risk for miscarriage.

Last night, I came across the following link regarding National Pregnancy and Infant Loss Remembrance Day:

I Think I Hear Your Mother Calling: Tales From the Empty Homestead

The author of the above blog requested other bloggers take action as follows:

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce it's incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

Action Steps:

Step 1.

Use Your Blog to Enlist Others - Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2.

Use Your E-mail to Enlist Others - Email 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3.

Help Pass the Stillbirth Awareness and Research Act - By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

GOAL: 1,000,000 Google results on October 15th when that term is searched for. Currently, Google only returns 20,400 pages - most of which have nothing to do with the bill.

In reading about this legislation, I came across another link they may interest readers:

First Candle

Let's get the word out about National Pregnancy and Infant Loss Remembrance Day as we edge closer to October 15th. Thank you.

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