EDS Myths and Facts

EDS Myths and Facts

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)

Ehlers-Danlos Syndrome
Network C.A.R.E.S., Inc.
P.O. Box 66
Muskego, WI 53150

Phone: (262) 514-2851      Fax: (262) 514-2851

2 thoughts on “EDS Myths and Facts

  1. Madeleine

    Well said. Another couple I would add:
    “She looks better than last time I saw her. She must be getting better” alternated with “she’ll probably grow out of it”.
    From the mother of an EDS sufferer.

    Liked by 1 person

  2. Pingback: EDS Myths and Facts | Through My Eyes

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