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The Full Story

About

Hacking Hypermobility is a project brought to you by Luna and Shelli to bring awareness to our mutual special interest in all things related to life as a "Zebra." After finding each other on TikTok (of course) we found a kinship that can feel so rare for people with our health conditions.

 

So, here we are trying to bring us all together...

  • TikTok
Vintage BEndy Square

Mission

We explore the health and wellness concerns of people on the hypermobility spectrum from diagnosis to management, asking those on the forefront of research and treatment how to help all of us on the hypermobility and connective tissue disorder spectrum including the Ehlers-Danlos Syndromes.

 

We speak loudly so fewer of us get diagnosed with these genetic conditions too late in life and so more of us can be proactive earlier in our health.

We've been symptomatic since childhood, but weren't diagnosed until middle-age.

Why the Zebra?

An adage taught to medical doctors in training is:

 

"When you hear hoof beats in the night,

look for horses — not Zebras."

Student doctors learn to begin treating the most obvious explanations rather than rare conditions. The axiom was first taught in the 1940s by Theodore Woodward, professor at the University of Maryland School of Medicine.

 

But, some horses do indeed have stripes. More recent medical study shows the more common types of inherited connective tissue disorders including Hypermoble Ehers-Danlos Syndrome and Hypermobility Spectrum Disorder are more common than previously thought.

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Meet the Team

Hacking Hypermobility is a collaboration
and passion project by Luna and Shelli
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