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Medically Complicated Makes Everything Complicated
By: Christina Coates The other day, I received a call from a person that was concerned about feeling lightheaded when ever they felt the urge to have a bowel movement. This person, like me and many others in the HOD community, got here by way of another rare brain disease. It has occurred to me…
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Disability Pride Month
By: Christina Coates July is Disability Pride Month. I did not know that July was Disability Pride Month until I was told by Erin Loughren on the first day of July. A question that I keep seeing and hearing in my newer circle of Rare Disease Community is “What does ‘Disability’ mean to you?” It…
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When You Have Convinced Yourself That You Are Not Disabled, and HOD Makes Sure to Remind You Who is in Charge
By: Christina Coates There I was, standing in the rain on the side of the famed “Road to Hana” in Maui, grateful to the rain for camouflaging my tears. The stinging shame was almost too much to bear. Before HOD (a brain disease), I enjoyed new adventures. I was the person who would get you…