Wednesday, March 27, 2013

I Need Your Help!

Did you know that we now have an official patient organization for people with Migraines and other headache disorders?  It was formed under the auspices of the American Headache Society, and it's mission can be found in the simple acronym EASE.  The purpose of this group is to Educate, to Increase awareness about Migraines and other headache disorders, Support those who suffer with headache disorders and their families, and Engage patients so that we can work together to make a difference!

This is not just for individuals who are disabled by headache disorders but for anyone who wants to see progress being made in the areas of Migraine and other headache disorder treatment, education, research, perception, awareness and funding.  In the U.S. alone, 37 million people suffer from Migraines (and that's not even including all the other headache disorders such as Cluster Headaches, aka, the suicide headache).  5 million people in the US have at least one Migraine a month.  That's 12 days a year when they are burdened with, if not incapacitated, by the pain and symptoms of a Migraine.  Most Americans can expect to live more than 75 years.  If a person were to suffer a migraine a month for even fifty years, it would mean the loss of 600 days of their lives - that's almost two years!!  Staggering, isn't it?  But I believe, along with others, that this can change through the very things for which AHMA stands - education, advocacy, support and engagement.

Some of you may ask, "why should I join an organization like this?"  My friend, Teri Robert, the current chair of AHMA, explains that in addition to raising awareness and increasing research that AHMA will also provide the newest information regarding Migraine and headache research and treatment, will hold webinars to educate both patients and doctors, will start support groups, will have an advocate mentoring program and an annual patient conference.  There is also a forum where all members (patients, caregivers and doctors) can confidentially and honestly share with one another.  

And the cherry on the top? The AHMA board is comprised of five patients and five of the top Migraine and headache specialists in the United States!!  That's right - real dialogue and interaction between our doctors and the patients!  Conceptually, the patient board members will direct the organization, and the physicians will provide assistance.  The patient conferences will have top notch Migraine and headache specialists presenting, in addition to all the other goodies already being planned for the first conference on November 24, 2013 in Scottsdale, Arizona.

So, why should you join??  Because for only $15 a year, you can be a part of making a real and tangible difference in your own life and in the lives of the millions of people who suffer with these disorders.  As an organized and formal vehicle, we can work together to improve research funding so that through new knowledge can lead to new and innovative treatments, and in doing so might ensure that you or your children or grandchildren might not suffer as much in the years to come!  As an organized and formal group, we can raise public awareness that Migraines and other headache disorders are not "just" a headache!  Let's help change the statistics!  Let's help ourselves and those we love who suffer from headache disorders find both support and hope for the future!  

I've had friends who have asked why they should join if they already interact with others who suffer with headache disorders, feel like they know everything they need to know, follow an expert blog on Migraines or if they don't really feel the need to interact with other sufferers.  The reason is because there is strength in numbers! When we work together, we CAN make a difference.  I am currently disabled by my Migraines and unable to work the job I adore because of them.  One of my great hopes is that through a group like AHMA, my nieces and nephews will never have to experience what I have over the past forty plus years.

Please take the time to go to the AHMA website and join today!

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