May is Ehler’s Danlos Syndrome Awareness Month
Ehler’s Danlos Syndrome (EDS) is group of a genetic conditions that affect the connective tissues of the body, primarily due to the abnormal structure or function of collagen.
Collagen is everywhere in our bodies. Many people would associate it with our hair and skin, but it in every part of us, helping to hold us together. It is particularly rich in our ligaments, eyes, hearts, veins, arteries and fascia. It even forms the scaffold of our bones! So if it is not working properly, neither can these systems.
The most common form of EDS is Hypermobile Ehler’s Danlos Syndrome (or hEDS), but there are in fact 12 different types, each affecting different parts of our bodies more significantly. hEDS is the most common, and because of it’s effects on the ligaments, muscles and joints, it is one that Physiotherapists are very interested in.
People who have hEDS will present with a combination of:
Multiple joint dislocations
Chronic joint pain
Hypermobility (or what is often referred to as “double-jointed”)
Very stretchy skin
Scars that heal poorly or result in a raised scar
Stretch marks in the absence of changes in weight
Issues with bowel/ bladder continence and pelvic organ prolapse
There are also a few other things that often present with EDS, such as gastrointestinal dysfunction, POTS (increasing heart rate and fainting when getting up quickly), food intolerances and allergies.
hEDS and HSD affect people right through the lifespan – from kids who have difficulty with learning motor skills, adolescents with injuries at sport, and adults whose joints are deteriorating prematurely with age. It is never too late to get help if you have these conditions.
I have hypermobility and I once dislocated my shoulder. Does that mean I have hEDS?
No, not necessarily. You can have hypermobility and a history of joint dislocation and sprains without having hEDS. If your hypermobility is significant enough we may refer to you as having Hypermobility Spectrum Disorder. But if you have hypermobility and ongoing issues with joint pain and instability, you should see a Physiotherapist who understands and can assist in screening for hEDS.
The effects of hEDS and HSD can be very debilitating, causing pain and fatigue. But there is a lot that Physiotherapists who understand connective tissue differences can do to help, including exercise therapy, injury prevention, bracing and taping, and continence Physiotherapy.
Our Physiotherapists have a special interest and understanding of hEDS and HSD. If you have concerns that may relate to a connective tissue disorder, or any joint pain or instability, call us or book online today.