By Elizabeth Akincilar, MSPT, Cofounder, PHRC Merrimack
Ehlers Danlos Syndrome is a rare inherited connective tissue disorder. It affects the skin, joints, and blood vessel walls.
It causes joint hypermobility (joints that move too much!) which can result in joint dysfunction and pain. If many joints are affected, it can cause muscle dysfunction throughout the body, as the muscles attempt to compensate for the lack of joint stability. This can result in body-wide myofascial pain. When the sacroiliac joints or hip joints are affected, the pelvic floor muscles can become dysfunctional resulting in pelvic pain, and/or urinary, bowel and/or sexual dysfunction.
The current classification includes 13 types of Ehlers-Danlos syndrome:
- Arthrochalasia EDS
- Brittle Cornea Syndrome
- Cardiac-valvular EDS
- Classical EDS
- Classical-like EDS
- Dermatosparaxis EDS
- Hypermobile EDS
- Kyphoscoliotic EDS
- Musculocontractural EDS
- Myopathic EDS
- Periodontal EDS
- Spondylodysplastic EDS
- Vascular Ehlers-Danlos Syndrome
EDS is often misunderstood; to help break down the confusion, let’s review some myths busted by the Ehlers Danlos Society:
“Myth #1: The Ehlers-Danlos syndromes are ‘just stretchy skin.’
Reality: The Ehlers-Danlos syndromes are a group of hereditary disorders of connective tissue. Connective tissue is found all over the body, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on.”
“Myth #2: EDS and HSD is ‘just being a bit bendy.’
Reality: Much more than ‘just’ hypermobility, people with EDS and HSD experience joint instability (subluxations and/or dislocations) and reduced position sense (proprioception) with an increased risk of injury to the tissues around joints and the surface of joints.”
“Myth #3: Hypermobile EDS (hEDS) is more severe than hypermobility spectrum disorder (HSD).
Reality: HSD, just like hEDS and rarer types of EDS, can have significant effects on a person’s health, whether this is related to their joints or to comorbidities. Among the most common of these concerns are nausea, vomiting, acid reflux, bloating, pain, absorption, and food intolerance concerns; autonomic disturbances of heart rate and blood pressure, bowel and bladder function, and temperature regulation; anxiety, depression, and phobias; and organ / systemic inflammation related to mast cell activation. These associations are very real. They seriously affect quality of life, and they need to be managed. These additional problems need to be evaluated and treated when an HSD is diagnosed.”
“Myth #4: Hypermobile EDS (hEDS) is diagnosed by genetic testing.
Reality: The genetic variant(s) that causes hEDS has not yet been identified. All other types of EDS have known genetic causes and can be confirmed through genetic testing. A diagnosis of hEDS is made clinically using the 2017 diagnostic criteria. There is no genetic test yet for hEDS.”
“Myth #5: There is no treatment for EDS or HSD.
Reality: There are many ways in which the symptoms and complications of EDS and HSD are treated. Often doctors and therapists will use many of the same treatments that are available for other pain disorders, and adapt them e.g., as done in physical therapy.”
This is the reality of EDS. It is a syndrome that can cause overall total body pain; it is much more than hypermobility. It is considered ‘rare’ as there are fewer than 200,000 US cases per year. While seen as rare, it still affects the day to day lives of those living with EDS. If you are one of those, see below for resources from the Ehlers Danlos Society.
Are you unable to come see us in person in the Bay Area, Southern California or New England? We offer virtual physical therapy appointments too!
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
Melissa Patrick is a certified yoga instructor and meditation teacher and is also available virtually to help, for more information please visit our therapeutic yoga page.
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