#migrainepose

Hi Everyone

This is a post with a difference from me. I have copied and pasted an email I received from the Migraine Summit leaders today with what I thought must have been a sick joke! Sadly it was no joke!

I know I tend to post articles of interest and nature pics mostly but today I am posting this email...

As most of my friends know I have suffered from chronic daily hemiplegic migraine since Sept 2016. Prior to that I had suffered chronic migraine with at least 3 or more a week for over 10 years.

My migraine disease is a disability now and has destroyed my life as I once knew it. I haven't been out to see friends locally since February and before that it was hit and miss. I can't even get to friends outside of my area and rely on them to come to me and the saviour that is online messenging. I cannot make plans, I can't go to events that I would love to attend, I cannot do much of anything with that said. The majority of my life is spent at home where I can be close to my bed and black out curtains. What time I have to myself I learn, read and study, or watch films etc... In the last year and a half I have had only 8 really good "normal" days where the pain didn't register. The rest of them I have pain, fatigue, neurological stroke like symptoms and more... Some times I claw a few hours back to do something the rest of the time I'm housebound and limited. My migraine disease has literally been life changing and not for the better!

With that said imagine how I felt when I read that a well established magazine makes a joke of my condition and "trivialises" it! Elle magazine is an institution, even if you don't read it, most of us have heard of it or seen it on shelves... They have an obligation and responsibility with such a large audience and clearly they are not respecting the many of their readers who will undoubtedly be migraine sufferers themselves after all it is around 1 in 3 women and 1 in 7 men that suffer this illness!

So, I am asking those of you who read this and are of course willing to do so; to do as the email below says and blast these ignorant insulting cretins that think its acceptable to make a joke out of our suffering! Use the hashtags below and let them know it is not acceptable in the slightest! What disability will they pick on next if this is allowed to go unchallenged?

Many thanks in advance to those of you that can and will do this for me, no bad feelings to those who can't or won't... 😊

Blessings to you all

💜 xxx

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"A recent Elle magazine article published last week said "All the Pretty People on Instagram are Doing the Migraine Pose".

This happened at a time when several migraine patient advocacy organisations were meeting in San Francisco which included the Migraine World Summit.

None of us were pleased by this article.

We reached out to Elle magazine asking them to reconsider the article which reinforces the stigma that shames patients with migraine. They responded with a modest change in the article title from "migraine" to "headache" but made no changes to the article's reference to migraine.

Migraine has devastating consequences in the career, family, relationships, and quality of life for millions of patients worldwide.

The article, which has seen been picked up on other beauty sites like Cosmo Australia and USA today, trivialises the suffering that can be experienced by someone with migraine.

Migraine already takes a heavy toll. We don't need another kick in the gut when we're already fighting for fair access to treatments, understanding from others and quality of life.

Stigma has been shown by migraine specialist Dr. Robert Shapiro to reduce the amount of funding research received. It also affects how many people suffer in silence and feel shame or guilt. It has even affected the availability of headache specialists who are in critically low supply.

Lets make our voice heard by @ELLEmagazine, @Cosmoaustralia, and others on social media like Twitter, Instagram and Facebook using the hastag #migrainepose #truemigrainepose

Migraine is not a beauty trend.

Kind regards,

Carl Cincinnato and Paula K. Dumas

Co-Hosts, Migraine World Summit

Phone: 1-888-525-6449

Email: [email protected]

Web: www.migraineworldsummit.com