NBC Features Ehlers-Danlos Awareness Activist Annie Segarra for Hispanic Heritage Month

Published by nbcnews.com on October 2, 2017

#NBCLatino20: Advocate for Inclusion, Annie Segarra

Armed with a Youtube channel, Twitter, Facebook and Instagram accounts, Annie Segarra, who identifies herself as a disabled, queer and Latinx, is fighting misinformation and stereotypes about disabled people and changing the prejudices many have about disabilities.

All her life, Segarra, who is Peruvian and Ecuadorian and also goes by the name Annie Elainey, saw herself as an activist. As a young girl, Segarra often found herself taking care of, and advocating for, her younger sister, who is autistic. Later, in high school, she often participated in protests advocating for LGBTQ rights.

But nothing prepared her for what she would encounter when she slowly began to experience a series of symptoms around the age of 23. After bouncing around medical specialists for three years, Segarra was diagnosed with what she suspected she had all along – a rare disorder called Ehlers-Danlos syndrome (EDS). This is the name for a group of genetic disorders that affect the connective tissues because of a mutation in one or more genes.

This explained the extreme fatigue she had been feeling and the sharp pain in her feet after standing for some time. As her health declined, she could no longer tolerate standing or walking for more than a few minutes and began using a wheelchair.

But Segarra quickly learned that disabled people have to endure prejudices from abled people and are often excluded from spaces that don’t accommodate those with disabilities.

“It opened my eyes to realize that positive body image is not just about how one feels. It’s also about how we view other people and our prejudices about other people based on how they look,” Segarra recounted, when we visited her in her South Florida home.

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