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Please, please, please... Read the letter below, then click the link in it and email your Senators TODAY!
Thank you!
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Good morning, dear readers,
Today, I'm writing to you somewhat differently from my usual way of doing things. This is more personal. More from the Migraine and headache sufferer me. More from the your friend me.
Some thanks and a plea...
To all of you who responded to the Alliance for Headache Disorders Advocacy Action Alert and emailed your members of the house, my very, very deepest thanks.
To those of you who have not yet responded to the Action Alert, I make this plea...
Can you spare five minutes, please? That five minutes will help everyone who has Migraine disease and / or other headache disorders now AND in the future.
This is an extremely important issue to me; not only professionally, but personally. Generation after generation of both sides of my family have lived with and suffered with Migraine disease. From my great grandmother to my grandchildren, this disease has taken its toll on our lives. For years, I have wished for a way to DO something that would make all of our lives easier, healthier, and happier.
I have lost 50% of the vision in my right eye and 25% of the vision in my left eye because of low-tension glaucoma. Glaucoma specialists have told me that it was most likely caused by the years of having horrid Migraines before type of abortive medication was available to me. Intraocular pressure (the pressure inside the eye) is elevated during a Migraine, and the periods of elevated pressure during the years of untreated Migraines damaged my optic nerves, causing the glaucoma and the vision loss.
Now, we have two daughters in-law and three grandchildren who have Migraine disease. Our granddaughter Alexandra had her first Migraine at the age of 2-1/2. I don't want her to go through what I have gone through over the last 47 years of Migraines; what many of you have gone through. I don't want her education, career, having her own family to be disrupted. I don't want her to face the possibility of blindness because of this disease. As you do for your children and grandchildren, I want better for her and for our other grandchildren. And it goes without saying that I want better for you and for myself.
Monday, March 17, is the last day for your Member of the House to sign the "Dear Colleague letter" from Congressmen Welch and Moran. So, we are down to the last days to send your emails.
I know everyone is busy and that many of you may well be in pain. That's one reason we're doing all we can to make this very easy to do. This was our first Action Alert, so we've had a few things to learn along the way.
The easiest and least time consuming way to send an email to your Member of the House regarding this Action Alert is to go directly to THIS PAGE.
The image above is of the "Take Action" section of the page. Just follow the directions, and you'll have a great email to your Member of the house in just minutes.
You can read the two sections of preset "required" text that we've put in place so you don't have to worry about an introduction or wording the closing section, which specifically asks our Members of the House to sign the Dear Colleague letter.
You can see the arrow pointing to the area where you can write a bit of a personal message about how Migraine disease and other headache disorders impact you or others you know.
Even a brief paragraph or two can be very powerful, but if you're not comfortable adding anything in that area, you can leave it blank. If you do write something for this part of the email, you may find it helpful to save it on your computer as a text document so you can use it again later when we write to our Senators.
After you click the red "Send Message" button, the next page that comes up presents an opportunity to enter the names and addresses of six people. If you choose to enter those names and email addresses, an email will go to them asking them to join you by writing an email of their own. If you don't want to do this, that's fine.
Following these steps, you will get a confirmation screen showing that your email has been sent. You will also receive an email from me and the other officers of the Alliance for Headache Disorders Advocacy thanking you for your help.
No system is perfect, so if you do not receive that thank you email, please repeat this process to send your email. This has only happened in a few cases, but I do want you to know about it so you don't miss out on this opportunity.
If you subscribe to our mailing list, you'll receive email updates when it's time to act again. I promise you that your email address will not be shared with anyone or used for any purpose other than keeping you updated on our advocacy efforts.
From the bottom of my heart, thank you for taking the time to read this and for taking the time to email your Member of the House. Together, we CAN make a difference in the future of the treatment available to us.
Do we want, need, and deserve better Migraine and headache treatments? Absolutely yes!
Think there's nothing you can do? But there is! You can take five minutes to send an email to your Representative in the House of Representatives. It's easy and only takes about five minutes. The Alliance for Headache Disorders Advocacy site is set up for us to send an email to our Representative, even if we don't remember who he or she is.
PLEASE, go to
www.AllianceForHeadacheAdvocacy.org NOW. Click the "What YOU Can Do"
link in the left column. You will go to our Alert Center. There is a box with
our Featured Alert. Simply click the red "Take Action" button in the Featured
Alert box. That will take you to a letter that's ready for you to add what you
want to say about this issue, fill in your name and address, and have your email
sent directly to your Representative. It is urgent that you do this
NOW because the House is setting 2009 funding
appropriations in just a few days.
Here's one undeniable fact for you...
Continue reading Take Action NOW for Better Migraine and Headache Treatment!
It's time for my promised update on Headache On the Hill.
For those of you not familiar with Headache On the Hill -- a group of
doctors, scientists, and patient advocates made a trip to DC in
September to talk with Senators and members of the House about the dire
need for an increase in NIH funding for basic headache and Migraine
research. That basic research MUST be done if we're to have new and
more effective treatments.
We're gearing up for the grassroots part of this campaign, and that's where each and every one of you come in. Since the Headache On the Hill participants were from several organizations -- the American Academy of Neurology, the American Headache Society, MAGNUM, the National Headache Foundation, the Headache Cooperative of New England, and others -- we've formed a new organization to continue the Headache On the Hill advocacy efforts. The new organization is the Alliance for Headache Disorders Advocacy (AHDA). You can reach our web site at www.HeadacheAdvocacy.org or www.MigraineAdvocacy.org.
What YOU Can Do To Help
Now:
Visit the AHDA site,
lood around, and sign-up for email updates. We will notify you by email
when new information is added and when it's time to take action.
Please
spread the word to your friends and family. You can download our flier
and distribute it to friends, family, whomever you know to encourage
them to participate in this project. Every single person counts, so
please talk to everyone you know about this and give them a copy of the
flier. CLICK HERE to download the flier.
Early in 2008:
The most effective time to influence Congress is early in the year. So it will be crucial that as many emails as possible reach Congress at that time in order to affect the 2009 NIH budget. The AHDA website will make emailing Congress much easier for you. Our email notifications will prompt you to return to our site and email your members of Congress at the most effective time. Please ask your friends and loved ones to visit our site and email Congress as well.
I hope you'll all become involved in this important initiative. We all know how important it is that more effective treatments be found for Migraine disease and other headache disorders. But, without NIH funding, the basic research upon which other research depends will not be done. Senators and members of the House do listen to their constituents, so every single email to them will be vital. This is our chance to make a difference, and the AHDA is making it as easy as possible for everyone to participate.
Please join us!
One of the biggest complaints Migraineurs have is access to Migraine abortive medications, especially the triptans - Imitrex, Maxalt, Zomig, etc.
The problem isn't getting a doctor to prescribe triptans. Doctors prefer to prescribe abortive medications that can actually stop a Migraine in its tracks rather than pain medications that can do nothing but mask the pain for a few hours.
So, what IS the problem? It all comes down to the price of triptans. Triptan prices range from $18 to $70 per dose, an average of $25 per dose, and Migraineurs frequently use two doses to treat a single Migraine attack. This presents us with two main problems:
Read Migraine Medication Prices and Election '08 to see how we can affect change!
The holiday season can be a fun time of year filled with high
expectations, special events, family and friends, and lots of great
food. But it is also a minefield for headache and Migraine sufferers.
The first edition of the Headache & Migraine Disease Blog Carnival
is filled with commiseration and ideas to help you cope.
A blog carnival is a blog "event" where blog entries from different bloggers, all on the same general theme, are featured. The Headache & Migraine Disease Blog is sponsored by Diana Lee on her wonderful blog, "somebody heal me." Thanks, Diana!
Visit the Headache & Migraine Disease Blog Carnival!
For those of you who know me a bit, you'll know that the phone number 888-MYCURE8 is enough to set alarm bells sounding loudly in my head. The product associated with this phone number has been the subject of three SharePosts on our site, and it's time for me to respond.
The product in question here is Headache Stay Gone. (And, no, I will not link to their site here.) According to the site, the product contains:
It is stated on the site that "Headache Stay Gone is affordable and free from side effects." Free from side effects? That is truly just impossible. These ingredients certainly do have potential side effects. I'm not going to take the time to track down every ingredient, but here are some potential side effects and notes of caution for some of them...
Continue reading Headache Stay Gone for Headaches and Migraines - Beware.
Many of you have asked to be kept up-to-date on Headache on the Hill. For those of you who don't know, a group of headache and Migraine specialists made a trip to DC in November to talk with Senators and members of the House about the dire need for an increase in NIH funding for basic headache and Migraine research.
These dedicated doctors took a minimum of two days away from their busy practices and covered all their own expenses to go to bat for funding that is critical to better treatments and perhaps even an eventual cure for Migraine disease. Michael John Coleman of MAGNUM, Suzanne Simons of the NHF, and I were invited to join these doctors for the first annual Headache on the Hill initiative.
Dr. William B. Young of the Jefferson Headache Center and I have been asked to put together the grassroots patient part of this initiative. Early next year, we'll be asking all of you to email your Senators and members of the House regarding this issue. We're building a special Web site where you'll be able to easily and quickly put together powerful emails to send directly from the site.
There are several major organizations endorsing this initiative -- The American Headache Society, the American Academy of Neurology, the International Headache Society, The NHF, MAGNUM, the World Health Organization, and others. We are forming a nonprofit group, the Alliance for Headache Advocacy, to continue with this work. This new group has no funding of it's own, and members are currently engaged in searching for corporate funding to cover the expenses of the software for emailing members of Congress and other necessities. That is where the majority of the funding will need to be obtained. Still, if you would like to make a small donation, you can click the "Donate" button below. That will take you to a page to donate to the American Headache Society. On the page that allows you to designate a purpose for your donation, please specify "Headache on the Hill." Believe me, every dollar counts and is greatly appreciated.
Stay tuned for further updates!
Things change over time. That's pretty much a given concept. Attitudes
change over time, some more quickly than others. When I was growing up,
doctors were... well, revered is probably a pretty good word. Everyone
respected doctors. It was pretty much unheard of for anyone to question
them. When the doctor told you to "take your medicine," you did it,
without ever even thinking about why. We would never have dreamed that
a doctor might have been mistaken about anything, ever.
It's not cliché to say that things were simpler then; it's just a fact. There were far fewer medications, fewer specialists. What we're finding now is that it's also true that many illnesses and diseases went undiagnosed and untreated. Migraine disease and many headache disorders are among those...
Patients are consumers, customers...
So, who has the patient become? The patient has become a consumer, a
customer of health care services. The Merriam-Webster Collegiate
Dictionary defines a consumer as, "one that utilizes economic goods,"
and a customer as, "one that purchases a commodity or service." The
Merriam-Webster Medical Dictionary defines a patient as, "a client for
medical service." This makes a great deal of sense, especially given
the rising cost and percentage of income associated with health care...
Continue reading Patients As Consumers - Managing Healthcare and the Healthcare Team.
In our forum, our members' SharePosts, and my email correspondence
with Migraineurs, there is a very distressing recurring problem being
brought to my attention. The problem is that entirely too many people
don't understand Migraine disease or other headache disorders.
They just don't get it!
This can cause us horrendous problems at work, school, social situations, or even at home with our families. What's the answer to these problems? I wish there were an easy, "one-size-fits-all" answer, but nothing can solve the problems in all situations. However, education can be a very effective tool in many cases. We've put together some resources to help you!
Continue to Migraine and Headache Education for Those Who "Don't Get It"
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