Migraine Congressional Hearing - Answers to Your Questions

WhySign

For a while now, I've been asking you to sign the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

The response has been... well, underwhelming at best. It occurs to me that perhaps I haven't done a very good job of explaining what a Congressional hearing could do for everyone with Migraine or another headache disorder and some other issues about the petition.

So, today, that's what I want to do - Explain some things about the petition, what it could accomplish, and why it's urgent that we get as many signatures on it as possible. To do that, I've reviewed some of the questions about the hearing and the petition and created a FAQ of sorts:

Question: "But Snopes.com and others say online petitions are bogus!"

Answer: Actually, Snopes doesn't say that. In reality, some online petitions are worthless, and some are scams.

This particular petition is legitimate and legal. In addition, it doesn't stop online. Advocates for the AHDA will be hand delivering it to members of Congress during our Headache on the Hill event on March 27, 2012.

Question: Why should we want Congress to hold a hearing about the impact of Migraine disease and other headache disorders?

Answer: Whether we look at the general public or at members of Congress specifically, Migraine and other headache disorders are still terribly misunderstood and surrounded by myths and stigma. At a hearing, patients, advocates, and health care professionals would have the opportunity to testify before a Congressional committee. These "witnesses" would share factual data such as statistics and share comments and stories that have been shared through the current AHDA petition. But more than that, some of these witnesses would be patients who would testify about what Migraine and other headache disorders have done to their lives and the lives of their families.

Question: What would a better understanding in Congress accomplish?

Answer: Short-term, a better understanding in Congress must be accomplished before we'll see any significant increase in federal funding for Migraine and headache research funding.

We depend on pharmaceutical companies to develop new medications. The problem with that when it comes to Migraine and headache medications is the difficulty with developing medications for diseases and conditions when scientists don't yet understand them well. Pharmaceutical companies develop medications. They don't do the kind of basic disease research that's yet to be done into the cause and pathophysiology of Migraine and other headache disorders.

Longer-term, increased research funding can lead to better treatments. At this time, there are no treatments on the market that were originally developed for the prevention of Migraine and headache. This must change.

Also, we would hope that a better understanding in Congress would help lead to a better understanding among federal agencies and the general public, including employers.

Question/Comment: "I'm busy and don't have time for this."

Answer: Everyone has time for this. It's a simple matter of following the link then entering your name, address, and email address. It can be done in one minute, literally.

Question: What's done with my personal information I enter when I sign the petition?

Answer: It goes into a database on a secure server. Only two officers of the AHDA have access to that information. Each Congressional office will receive a list of only the people in their districts who signed the petition. For Senators, of course, that will mean the whole state. For members of the house, that will mean only their own Congressional district.

We NEVER share or sell our data or our mailing list, not even with the organizations that are members of the AHDA. We may email you in the future when there's action to be taken, but that is the only email you will receive as a result of signing the petition. We take your privacy very seriously, as seriously as we take our own.

Question/Comment: But the country is already in a financial mess!

Answer: We realize that. At this point, we're asking for a Congressional hearing. Do we also want an increase in research funding? Certainly, we do, and we absolutely understand. But please hear me on this. At this point in time, when it comes to federal funding for medical research, there is no correlation between the amount of funding and disease burden. By disease burden, I don't just mean the number of people who have a disease or condition. I mean the total burden of it -- how many people it affects, how severely it impacts people, the economic cost of the disease, the social cost of the disease, and more.  In previous years, when we've gone to Congress asking for increased research funding, we've also talked to them about there needing to be a better correlation between funding and disease burden so that the federal funding for research is allocated in a manner that is most beneficial.

Question: Who can and should sign the petition. Do you have to have Migraines or headaches? Do you have to live in the U.S.?

Answer: We'd love to see as many signatures of U.S. citizens over the age of 18 as possible. No, you don't have to have Migraines or headaches. Yes, you do need to be a U.S. citizen. If you're not a U.S. citizen, you can still help by sharing the link with your family and friends in the U.S. and asking them to sign the petition.

I hope this post answers any questions you may have about this petition. This issue and petition are vitally important to so many people.

If you haven't signed the petition, please take just a minute to sign it now...

Sign the Petition.

If you've already signed it, please share the link with your family and friends and ask them to sign it. If you have a Facebook page, please share the petition or his blog post on your Facebook page. Tweet about it, please?

Live well,


 

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© Teri Robert, 2012
Last updated March 14, 2012.


Living with Migraines - Thoughts on a Sunday

ThoughtsSunday2

It's been a tough week in the Migraine and headache community, and that's really an understatement. Everywhere I turn, people are suffering, physically and emotionally.

The weather seems to have a personality disorder - it can't decide if it's winter or spring. That's triggering Migraines for many of us. Cluster sufferers are having a tough time too.

There was a suicide in the community last week. I don't know if I'm more sad or angry about it. I'm sad for the woman who took her life, but I'm so angry at her ex-husband that he should be glad he'll never have to face me. He's one of those not-a-freakin-clue jerks who is so selfish that he divorced her over her Migraines. If I had my way, he'd meet the fate that servants used to face in ancient Egypt and be buried with her. The stigma of Migraine stuck again.

OK, taking some deep breaths here. A friend of mine, Mary Seroski, sent me a link to a YouTube video that I just have to share with you. It's undoubtedly the most beautiful video I've ever seen. I watched it and marveled at the beauty of it and of all of God's gifts it depicts. It gave me hope. I hope it will do the same for you...

Live well,


 

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© Teri Robert, 2012
Last updated February 26, 2012.


Living with Migraines - Thoughts on a Sunday

ThoughtsSunday

Good morning, all. It's Sunday again, and once again, a Migraine is kicking my behind. Grrrrrrrrrrrr. Still, I'm observing my Sunday routine of taking time for reflection and applying some of my more spiritual thoughts to my world.

It seems that 2012 is off to a rocky start for quite a few of the people I know who have Migraine and other headache disorders. The constantly changing temperatures in parts of the country are a big Migraine trigger for some, and some are feeling the stigma of Migraine diease even more strongly than ever.

Migraine is often referred to as an "invisible illness." There are no visible cuts or bruises, no casts on arms or legs. Many of us look perfectly "normal" to other people, even when we have a raging Migraine. So often, people just can't understand when we can't do things with them, when the perfume they wear in the office triggers a Migraine and sends us running to the restroom. They don't understand that over-the-counter products such as Tylenol, Advil, and Excedrin Migraine are about as effective for many of us as swallowing a couple of breath mints.

Even among Migraineurs, there is often a lack of understanding. Those who have a few mild Migraines a year sometimes thing that people who have Migraine daily or near daily and are totally incapacitated by them are exaggerating. They don't understand why some of us "insist upon calling these headaches a disease" or why some of us are "making such a fuss" that we're taking a petition for Congressional hearings to Congress in March.

OK. By now, you may be wondering where anything spiritual comes into this. Here it is - I think the most important thing in living a "good" life is how we treat other people. If you believe in the Bible, do you remember in the book of Matthew when Jesus is asked "What is the greatest of the commandments?" He replies:

"Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and greatest commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself." (Matthew 22:37-39)

If you're not into the Bible, just think of the "Golden Rule." Do unto others as you would have others do unto you."

So, to me, it all boils down to loving God and being good to the other people in our lives, and that (and probably having a Migraine) brought me to thinking about the how people with Migraine are often treated - by those who don't have Migraines and by some who do.

Then there's one of the most valuable lessons my father ever taught me - that it's not enough to talk about your principles, you have to live them too. That you teach by example. Of course, there are times when I'm better at that than others. I have to keep trying.

In the end, what I'm getting at is that before we dismiss someone's illness or that something seemingly trifling that we do could actually make them ill, let's stop and think for a moment. Give them the benefit of the doubt. If a friend or coworker has an illness, we need to not just dismiss it or them. Learn a bit about it, to be a considerate human being. And, we need to teach and lead by example. If we're more considerate of a coworker, another person may be more considerate of them, then another and another. How we treat other people makes a huge difference, not just to them, but to us as well. It feels good to be nice.

To close, here's a darling video that demonstrates this point...

Live well,


 

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© Teri Robert, 2012
Last updated January 22, 2012.


Migraine Gem of the Day - Stigma Worsens Migraine Burden

MigGem166Most people with Migraines have encountered the stigma associated with it. We all know the stigma is hurtful and makes us unhappy, but did you know that studies have shown that the stigma worsens the burden of living with Migraine disease?

This statement comes from a research poster shown at an American Headache Society conference in 2010:

"This is the first study to evaluate stigma in Migraineurs. Stigma is significant in Migraineurs attending a clinic as measured with the SSCI. It is worse in chronic than episodic Migraineurs, and correlates with disability but not with age, gender, income, or education."*

To learn more about stigma and Migraines, check out Stigma Worsens Burden of Migraine.

* Park J.E.1; Kempner J.2; Young W.B. "The Stigma of Migraine." Poster presentation. 52nd annual meeting of the American Headache Society. Los Angeles. June, 2010.

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© Teri Robert, 2012
Last updated January 10, 2012.

This is the first study to evaluate stigma in Migraineurs. Stigma is significant in Migraineurs attending a clinic as measured with the SSCI. It is worse in chronic than episodic Migraineurs, and correlates with disability but not with age, gender, income, or education

Satisfied with Available Migraine Treatment?

Are you satisfied with the Migraine treatments that are currently available? Do you think doctors; the general public; your family, friends, and employers understand Migraine? Have the myths and misconceptions about Migraine and the stigma that comes with having Migraine disease gone away?

No?

MimeSignPetition
For more information about the AHDA petition to Congress, see Better Migraine Treatment, More Awareness - Take Just 2 Minutes.

If we don't speak up for ourselves, we can't expect others to stand up for us. Don't sit back and think that other people will sign the petition so you don't need to. This is not JUST another online petition. It is set up through a company specializing in delivering messages to Congress AND advocates from the Alliance for Headache Disorders Advocacy will PERSONALLY be delivering the petition to members of Congress during Headache on the Hill in March, 2012. If Migraineurs, their families, their friends, and others who are concerned don't sign this petiton AHDA advocates cannot succeed. Honestly, if you don't sign this petition and help with efforts to improve the state of Migraine research and treatment, you forfeit the right to complain about it.

Please sign the petition!

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated December 13, 2011


I Still Remember Abi and Her Last Migraine

RememberingAbiI sitll remember a young woman named Abi and the last Migraine she had. Abi was 21-years-old, just shy of her 22nd birthday, and she was having horrible Migraines. She came to a live online chat I was hosting one night and told us that she was on the third day of a horrendous Migraine. It was a Wednesday evening in October, 2001. I and the others in the chat room pleaded with her to get her parents to take her to the emergency room. She told us that she couldn't because they'd accused her of faking her Migraines for attention. Her sister was having problems with depression, problems that needed serious attention from their parents, and they thought Abi was "acting out" because her sister was getting more attention.

On Friday, I received an email from her fiancé, Jeff. The Migraine Abi had on Wednesday had continued and caused her to have a stroke. She was in the hospital, and he wanted me to pray for her recovery. I did pray for her, and Jeff kept me updated until Abi was able to go home and get back in touch with me. We thought the worst was over, and we hoped that her parents understood her and her Migraines better.

That's not what happened. A few weeks later, another Migraine struck and, with it, another stroke. This time, Abi didn't survive the stroke. I still have emails from Abi and Jeff as well as the transcript from that Wednesday chat and transcripts from some instant messenger conversations with Jeff. After Abi passed away, Jeff said,

"I've been spending the last few days in Abi's room. Cleaning up her things, going through stuff. Anyway, Abi kept a journal, wrote in it every day. She knew her time was coming, and wrote a letter asking me to tell you some things she wanted to say..."

Jeff then emailed me what Abi has wanted to say to me. She said,

Teri,
I wanted to take some time to thank you for all you've done for me, and for everyone.  You have a tremendous heart, a ton of love and understanding. Your soul is one of a kind.  I'm sorry to have worried you, I'm sorry I didn't listen to you and get help right away.  God led me to you before I died so I could know and appreciate your spirit.  Thank you! Please know that I am not hurting anymore, I am with my Heavenly Father and joyfully wait to see you here in heaven some day.  Can you do me a favor?  Could you please help others understand about migraine, and that getting immediate treatment is important?  I will be with you always.  I love you Teri.  Please be kind and gentle with yourself.  Thank you for everything! 
Love,
Abi

I will ALWAYS remember Abi, her last Migraine, and what I learned from her. I will always honor her last request of me and continue to work to help others understand Migraine better. If I can prevent what happened to Abi happening to even one other person, it will be work well done, time very well spent.

Some people think I'm a bit obsessive when it comes to educating people about Migraine disease, increasing awareness, and reducing the stigma. Maybe this post offers a bit of insight to what's behind my vehemence. Here's a short poem I wrote about Abi:

Too Short

almost 22-years-old
almost, not quite
she visited a few times
then was gone
she needed
but gave more than she asked
then she was gone
she loved and laughed and cried
but then she was gone
was it with a whisper
or with a shout that she left?

Abi, I'm keeping my promise. I miss you.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated November 26, 2011


Children... Adults... Migraine... So Many Thoughts!

On this Monday morning, as I start the new week thinking about all the people I know who are starting the week with a Migraine, I'm also starting it with today's  - to write an ekphrasis post. Ekphrasis is writing about an other art form, and this challenge is to choose an image that inspires us positively or negatively and free write about it. The challenge is also to give ourselves exactly 15 minutes to write without stopping or editing.

So, be warned. I'm going to insert the image, then write and post, without editing...

ChildBandagedBear400
Migraine is a vicious, insidious, pernicious, hateful, insidious, malevolent disease. About the only good thing that can be said about it is that it isn't sexist or racist... it doesn't discriminate against the young or the old. It will brutalize anyone.

Migraine first struck our granddaughter Alex when she was just 2-1/2, still a baby... too young to tell us what was wrong, but not too young to suffer. She hid her face against Becky (her mother) to avoid light. She cringed at every sound. And she held her tiny head and cried in pain.

When it comes to not caring about the burden of a disease when allocating research funding, the NIH doesn't discriminate either. There's no correlation between disease burden and research funding, and FDA officials I've had contact with don't discriminate based on age, gender, or race any more than Migraine does. The funding seems to go to the squeakiest wheel, regardless of whose needs get ignored.

The stigma associated with Migraine acts the same way. Stigma doesn't give a damn about age, gender, or race. It smacks everyone and anyone down. What's truly upsetting about stigma is that it's PEOPLE who create and perpetuate stigma. It's PEOPLE who make other people feel like crap about themselves just because they have Migraine, a genetic neurological disease. PEOPLE who do this to strangers, family, friends, life partners, children, anyone - without discrimination. PEOPLE acting out of ignorance, being judgemental, being "doody-heads," as our grandson Johnny would say.

You! Yes, you! Do you, even without realizing it, add to the stigma and misery associated with Migraine in how you react to people with Migraines? Do you tell them, "It's just a headache. Take some Tylenol?" Do you criticize your coworker who missed work because of Migraine? Do you continue to wear perfume or fragranced lotions to work even though a coworker has Migraines that are triggered by fragrance? Do you get angry if your friend has to cancel out on going somewhere with you because he or she has a Migraine? Have you quit calling a friend because they're so often unable to do things with you because of their Migraines?

Oh, yeah. Migraine will strike anyone. It doesn't discriminate. What's even more disturbing is that many people are the same way in the way they treat people with Migraine, and that perpetuates the myths and misconceptions AND the stigma associated with Migraine.

Stop and think about it. Do YOU feed into the myths, misconceptions, and stigma? If you have Migraines, you may be unwittingly feeding into it. When someone makes a comment or otherwise demonstrates that they haven't a clue when it comes to Migraine, how do you react? Those of us living with Migraine owe it to ourselves and other Migraineurs not to just "let it go." We need to be educating other people when we encounter these problems. It's old and cliché, but it's true. If we're not part of the solution, we're part of the problem. If you don't have Migraines, you're bound to know someone who does. There are more than 37 million of us in the US. How do you respond to the people you know who have Migraines? Do you respond with understanding, riducule, or indifference?

WAKE UP, PEOPLE! This disease is difficult enough to live with without us making it worse for people. Learn, share, educate, help dispel the myths and bust the stigma. Look at the photo above that I've been sitting here looking at. What if she were YOUR child?

Whew! I didn't really mean to go off on a rant or step up on my soap box, but it happened. I hope you'll think about what's I've said.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated November 21, 2011