The pain is all in your head. You’re just clumsy… These are just a few of the misconceptions about people living with Ehlers Danlos Syndrome. Most myths about a condition or disease tend to stem from a lack of knowledge and understanding. This seems to be true with EDS as well. As with many “under researched” conditions there is a myth for every truth.
As May is National EDS Awareness Month we thought it would be a good time to dispel some of the most common misconceptions about EDS.
Myth & Facts About Ehlers Danlos Syndrome
Here are some common myths and facts about EDS:
Myth: “Ehlers-Danlos is only a muscle and joint disorder
Fact: EDS is characterized by a genetic defect in connective tissues that make up 21% of the body. Since connective tissues support many organs and other body parts and tissues- it can be a multi-system disorder depending on the type of EDS.
Myth: “This pain you’re feeling… is all in your head.”
Fact: There is pain associated with EDS. Individuals with EDS experience both chronic and acute pain. With no major medical trauma evident other than their hypermobility- some physicians contribute the pain, to hormones, stress, or that it has to be in their heads. Pain management can be challenging for EDS sufferers.
Myth: “You’re just clumsy, that’s all.”
Fact: Many with EDS report that they were clumsy as children and some still are today. They seem to get hurt very easily. EDS sufferers illustrate a higher incidence of foot and ankle problems. Some common problems reported due to hypermobility- include ankle instability, clubfeet and a flat arch.
Myth: “You don’t have stretchy skin, so you can’t have EDS.”
Fact: Hyper-elastic skin is an indicator for classic types of EDS, but is not typical for all types. Hypermobility, where various joints of the body move beyond what is considered to be normal, is a more common trait for all forms of EDS.
Myth: “You don’t “look” like you have EDS.”
Fact: You don’t have to be tall and thin in order to have EDS nor do you have to have a specific skin color. Those who have EDS can vary in height, weight and ethnic backgrounds. There is no known ethnic, racial, geographic or other population trait that appears to be predisposed to EDS.
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For more information or to find an EDS support community:
The Ehlers-Danlos National Foundation http://www.ednf.org/
Ehlers- Danlos National Foundation Support Community https://www.inspire.com/groups/ehlers-danlos-national-foundation/
Our blogs are educational in nature and are not intended as a substitute for medical advice. Because your condition is unique to you, it is recommended that you consult with your health care provider before attempting any medical or therapeutic treatments. We are always happy to answer questions about products mentioned in our blogs, however, we cannot provide a diagnosis or medical advice.
Written by:
Ginny Wolfe has been part of the OMA team for more than 10 years, creating educational content about arthritis, injuries, various health conditions and conservative treatment options. She works closely with hand therapists and orthopedic product specialists to develop clear, accurate resources that help readers better understand their conditions and the products that may help. The information on OMA is educational and not a substitute for professional medical advice.
