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Tag: Ehlers Danlos Syndrome

A Letter to My Disbelievers

November 19, 2019November 19, 2019Leave a comment

By Jorie - Dear Disbeliever, As I sit here writing this letter, and as you sit here reading it, you may believe that because I’m physically and mentally able to write in this moment, because I am conscious and communicating well, that it means I’m not in pain, that I have zero symptoms affecting me. … Continue reading A Letter to My Disbelievers

Showing Our Stripes for Rare Disease Day

February 28, 2019March 1, 2019Leave a comment

By The Migraine Mantras Team - Rare Disease Day, recognized annually on February 28th, brings awareness to various medical conditions that fall under the category of 200,000 patients or fewer in the US, and 2,000 patients or fewer in the EU. An alarming 1 in 20 people will live with a rare disease in their … Continue reading Showing Our Stripes for Rare Disease Day

Being a “Zebra” with Migraine

May 31, 20184 Comments

By Jorie, Jeannette, & Sarina - If you’re a fairly involved member of the “spoonie” community, you probably know the term “zebra” and what it means in relation to health. But if you’re not, you’re likely wondering: what in the world is a “zebra” and what does it have to do with health? A “zebra” … Continue reading Being a “Zebra” with Migraine

Getting Over the Hill: Accepting a Mobility Aid

March 18, 2018Leave a comment

By Jeannette - My trip to Headache On The Hill 2018 brought about a surprising learning experience that ushered in a bit of necessary reflection, regarding my hesitation to ask for and accept help. I did not realize until after I received my acceptance to attend Headache On The Hill the extensive amount of walking … Continue reading Getting Over the Hill: Accepting a Mobility Aid

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