migrainesurvivalblog

Headache & Migraine Awareness Month June 2014 – Personal Re-cap

 

 

supporting the fighters

By now, I hope it is clearly evident that the month of June, 2014, was designated as Headache and Migraine Awareness month. Perhaps it was the daily posts that I shared on Facebook and Twitter ;), including the pictures, videos, and quotes.

I have been overwhelmed this month in reading daily blog posts, watching videos and reading the statistics related to these neurological diseases. Other migraineurs, advocates, warriors, family members and friends, who focused their efforts on raising awareness, and fighting to stop the stigma. And, honoring and remembering those that lost their battle and left this world much too soon…

As I think back over the past month, I am reminded of some of the posts that left a lasting impression, and I’ve consolidated them below for my own sanity, and for others that may have missed them.

Author JP Summers’ “Stop the Stigma Campaign”

I had the pleasure of “meeting” Author JP Summers through social media. She worked tirelessly on the “Stop the Stigma” campaign, creating posters each day that provided a snap shot of varying types of headache and migraine diseases, and introducing us to those that are affected. From young children to the elderly, these diseases don’t discriminate. The brave participants provided pictures, and in a few sentences, the debilitating effects that their disease has on their lives. This included but is NOT limited to: days, weeks, and months spent in bed; missed life events; loss of family and friends, employment, personal independence; and sadly in some instances their own lives…

Author JP Summers created a Facebook page for this campaign: https://www.facebook.com/StoptheStigmaHeadacheDisorders. I invite you to “Like” this page. Perhaps you or someone you know can relate to one of the stories and find a sense of community in remembering that you and your loved ones are not alone.

stop the stigma

 

“The Faces of Migraine 2013” YouTube video: https://www.youtube.com/watch?v=jwU8GKGTtso#t=19

This video was created in 2013 and re-circulated again this month. You will be introduced to migraineurs and can view the staggering statistics presented. Here are some highlights (or rather, low lights) from the video:

  • 36+ million Americans are affected by migraine diseases
  • Globally, migraine is the 7th leading cause of disability
  • Not a single drug on the market today was originally developed specifically for migraine prevention
  • There is NO cure for migraine
  • Migraine research is pitifully under funded by the National Institutes of Health (NIH), government, industry, and the voluntary public health sector. According to the NIH Public Access Manuscript: “Despite the significant burden that headache disorders place on individuals and society, federal funding of headache research is minimal. The NIH is estimated to expend approximately $13 million annually on headache research. This accounts for less than 0.05% of the total NIH budget.” A link to the complete report can be found here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538853/

“Tribute to Melissa Dwyer” YouTube video: https://www.youtube.com/watch?v=ZMb_8wsqHMk

Melissa

A beautiful young woman, Melissa Dwyer (pictured above), lost her battle with crippling migraines on June 7, 2013 at age 22. For Melissa, suicide was the only answer in finding relief from the constant pain. This video reminds me of suffering in silence, hiding behind a smile, and wearing a mask. As I look at the beautiful smile on her face in each picture in the video, I can relate to how much pain was evidently behind her eyes, something that anyone living with a headache or migraine disease can relate to and understand.

It was also a painful reminder of my dark days, and my own attempts to end my life. YOU MATTER. Don’t give up the fight…

36 Million Migraine Campaign: http://www.americanmigrainefoundation.org/support-the-foundation/36-million-migraine-campaign/

“The 36 Million Migraine Campaign is the first of its kind ever in headache medicine. It is dedicated to increasing our nation’s research investment in migraine and raising public visibility for one of the world’s most disabling disorders.” The campaign was launched in 2013 by Cindy McCain, chair of the foundation, who partnered with the American Migraine Foundation. Cindy McCain suffers from migraines and was fed up with the lack of funding and research. She was more motivated than ever to help make a change after losing a good friend who committed suicide. Yet another sobering reminder of the devastating effects of this disease.

Cindy McCain

Included within this site is a link to Cindy McCain’s speech when the foundation launched. The direct link on YouTube is: https://www.youtube.com/watch?v=xBQXo-tZaSI&feature=youtu.be

Some quotes from Cindy McCain’s speech that struck a chord with me:

  • “Migraine is an illness, and those that suffer have long been stigmatized by society.”
  • “(Migraine) is the 3rd most common disorder in the world, the 4th most disabling among woman and the 7th overall, yet no one hears us. I am deeply offended by this, and I’m tired of being ignored”.
  • “I want medications designed specifically for me as a migraine sufferer, not hand me downs”.
  • “I’m tired of being a second class patient. I want a cure”.

There is a wealth of information and statistics on this site, and an opportunity to donate. The goal of the campaign is to raise $36 million dollars. EVERY dollar counts! Won’t you consider donating?

Migraine Research Foundation – Invest in the cure: https://www6425.ssldomain.com/migraineresearchfoundation/donate/index.asp

Another foundation focused on raising awareness and funding for migraine research. EVERY dollar counts. Won’t you consider donating?

WE NEED A CURE. WE DESERVE A CURE.

I’m proud and overwhelmed by the number of people that contributed this month, and hope that it doesn’t stop on July 1st. We must stand united and continue to press on in our fight to see and experience the much needed change!

Blog Posts

There is a list of migraine blogs that I follow on my home page. Several bloggers participated in the American Headache and Migraine Association’s (AHMA) daily blog challenge with the theme of “Dreaming of a World Without Headache and Migraine”. It is interesting and enlightening to read others perspective. I encourage you to visit and follow these bloggers who share the same goal of raising awareness.

When I started my blog and started advocating, I said my measure of success would be to reach just one person. I can only hope that I did…are you aware?

your life is your message

So…do you still think it’s “just a headache”? Do you still think it’s “all in my head”? THINK AGAIN……………………………………………………………..

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One response to “Headache & Migraine Awareness Month June 2014 – Personal Re-cap

  1. Ashley says:

    I am almost 35 and have suffered with both migraine and cluster headaches for 20 years it is amazing how far things have come…thank God my headaches are under control now but it took trying everything and anything to get here….my hope for the future is that trying everything isn’t the best option and that no one has to go through multiple doctors telling them it’s in their head…to everyone suffering you can get through this

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