As with many disorders that have received little research, there are numerous false assumptions that arise.
These are some that have been made about Ehlers-Danlos Syndrome (EDS). They false assumptions stem from a lack of understanding, education, and knowledge about this disorder.
Myth: “You don’t have stretchy skin,so you can’t have EDS.”
Fact: Loose stretchy skin is “not” a distinguishing characteristic among all the types of Ehlers-Danlos Syndrome (EDS).
Myth: “Ehlers-Danlos is an auto-immune disease.”
Fact: No. An “auto-immune” disease is one that is defined as a disorder that results from disregulation of the immune system.
Myth: “Only certain ethnic groups are predisposed to Ehlers-Danlos Syndrome.”
Fact:: There is no known ethnic, racial, geographic or other population divide that appears to predispose to EDS or to different forms of EDS
Myth: “Pain “is not” associated with EDS.”
Fact:: Yes, it most definitely is. Pain is a common manifestation of EDS
Myth: “This pain your feeling… is all in your head.”
Fact:: “Individuals with EDS experience frequent and severe pain throughout much of their lives.
Myth: “You don’t “look” like you have EDS.”
Fact:: EDS is a group of inherited disorders of connective tissue, not one disorder with a single expression.
Myth: “It’s only growing pains.”
Fact:: “Chronic frequently debilitating pain of early onset and diverse distribution is a constant feature in most individuals affected with different types of EDS.”
See http://www.ehlersdanlosnetwork.org/myths-facts.html for more details of this article.
This article is part of the EDSNC organization’s website. (The group contains ten doctors, including Dr. Diana Driscoll)