Massage & Bodywork

NOVEMBER | DECEMBER 2019

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40 m a s s a g e & b o d y w o r k n o v e m b e r / d e c e m b e r 2 0 1 9 lack the structural strength that protects the delicate working parts of the eye. "I have super elastic skin—my face is stretchy. I live with chronic, totally random pain. I had endometriosis and abdominal surgeries, which led to massive amounts of scar tissue in my abdomen. I have Raynaud's syndrome, scoliosis, and migraines. I had lots of complications with pregnancy: I had an umbilical hernia, my pubis symphysis separated, and my feet were so hypermobile that bearing weight caused me excruciating pain. Later, when I had a hysterectomy, my surgeon was amazed that I was able to have a baby at all, given the state of my uterus." A list and brief descriptions of the 13 discrete subtypes of EDS is provided in the "Connective Issues" video that accompanies this article. HOW IS EDS TREATED? At this point, cases of EDS are treated according to symptoms. People with hypermobile joints are taught how to preserve joint function and are discouraged from stretching joints beyond a healthy range of motion. They are also warned away from contact sports or other activities that put them at risk for injury. Skin wounds are typically treated with bandages or wound glue rather than sutures, because the skin is so delicate. Any surgery or dental work is conducted with extreme care because of poor wound healing, and because people with a risk of mitral valve prolapse are also at risk for a bacterial infection of the heart called endocarditis, a possible complication of dental work. "My main painful areas are my spine (my scoliosis makes my vertebrae poke into my quadratus lumborum) my hips, and my feet— my feet are probably more hypermobile than my hands. My legs kill me all the time. If I walk, they'll throb. I assumed everybody had that—I was surprised when I learned that isn't so." subluxations and dislocations: people with EDS often dislocate fingers, shoulders, and even hips. These dislocations may resolve without intervention ("Don't worry about that hip, it'll pop back in" was the advice given to one young patient), but tissues are damaged in the process. And cumulative trauma can lead to both lost joint stability and a high risk of early-onset, painful, and irreversible osteoarthritis. Skin Problems People with EDS may have unusually stretchy skin, and one rare form of the condition leads to disfiguring skin laxity. The skin often has a characteristic soft, velvety texture. But while it is highly extensible, the skin of many EDS patients is fragile and prone to bruising and easy tearing. The injury repair process tends to be slow, with delicate scar tissue. In addition, many people with EDS have lesions called molluscoid pseudotumors. These are spongy nodules that develop with scars over areas that are frequently traumatized. Other Problems The genetic anomalies that cause EDS can affect the tissue integrity of many other organs. Bones are often shorter than average, leading to undersized stature. Muscles tend to be hypotonic and weak. The spine is prone to scoliosis, which can develop in infancy. Hollow structures may lack the ability to withstand internal pressure. In this way, people with some types of EDS are susceptible to aneurysm of blood vessels, painful constipation, intestinal perforations, and rupture of the uterus or bladder. Poor-quality collagen can compromise the valves of the heart, leading to mitral valve prolapse and a risk of arrhythmia, heart failure, and heart valve infection. Weak or insufficient collagen in the gums can lead to gum disease and tooth loss. If this occurs in the eyes, then the sclerae may have a bluish tinge and may People with EDS have loose, hypermobile joints and stretchier-than-average skin.

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