Sometimes a video speaks VOLUMES more than mere words.
Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS).
Maybe she made the video so other people living with EDS can post it on their Facebook page or email it to their know-it-all auntie to prove that EDS is a real disease affecting real people—not something that’s “just in your head.”
Or maybe she made it to explain to co-workers/acquaintances/whomever that the pain of EDS is unrelenting—that it’s not “so cool to be so flexible!”
We KNOW that one reason she created it was to participate in a disease awareness campaign created by the fabulous Ehlers-Danlos Society.
I hope she knows that it’s being used to help others educate the people around them about this rare genetic disease, too.
Fun Facts About Collagen
EDS alters the biology of the substance that holds our bodies together—a protein called collagen.
Did you know this about collagen?
- It’s the most abundant protein in the human body
- There are 16 types of it, but 80-90% fall into three major categories (types I, II, and III)
- It’s found in the bones, muscles, skin, and tendons
- It functions to provide strength and structure and to help tissue withstand stretching
Ehlers-Danlos Info
EDS is a group of disorders—not just one. All of those disorders, however, affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Researchers have found that mutations to more than a dozen different genes cause EDS.
But almost all EDS types share symptoms mentioned in Kaleigh’s video:
- Hypermobility (joints have an unusually large range of motion, or, as Kaleigh says, “too flexible”)
- Joints that hyperextend and dislocate easily
- Bones that are more noticeable
It’s a condition that can leave the people who have it feeling alone and without hope—especially when members of their inner circle don’t understand what they’re going through.
