Ehlers-Danlos Syndrome or EDS is a connective tissue disorder that has a reputation for causing double-jointed body parts and super stretchy skin. Although joint hypermobility and dermal hyperelasticity may be hallmark signs of the condition, this represents a portion of the understanding of 13 variations of EDS. Due to the large spectrum of symptoms and combinations of symptoms that are possible, there is more than meets the eye. Hence, people diagnosed with EDS are referred to as medical “Zebras”.
EDS is a rare genetic condition that causes mutations in the protein network of the body leaving a weakened web of connective tissue. Collagen is like the glue that holds the body together but in the case of EDS, the glue doesn’t function properly. This means a person with EDS may have problems with the structure and function of their skin, muscles, cartilage, bones, blood vessels, intestinal tract, reproductive tract, and internal organs. These areas are more susceptible to damage, dysfunction, and symptoms.
One of the challenges in diagnosing a person with EDS is that they may appear normal at first glance so deeper investigation is necessary to understand all affected parts. That’s because connective tissue is everywhere in the body. In cases where a person with EDS has unstable joints can result in dislocations or subluxations. The variations in the condition can include other problems such as chronic pain, easy bruising, loss of vision, severe heart valve problems, muscle weakness, neuropathy, mast cell activation syndrome, POTS (postural orthostatic tachycardia syndrome), physical deformities, periodontal disease, hernias, dysautonomia and several more possible findings that go into the diagnostic classification.
There is no cure for EDS. Usually, diagnosis is delayed because of the lack of awareness of the condition and the overlap of symptoms disguised as another problem. Genetic testing can be helpful for some diagnostic classification as well as movement testing to give a Beighton score. Finding out sooner in life helps the person develop lifelong coping strategies. Life expectancy for some with EDS, not all, can be around 40-50 years.
Treatment for EDS will often be a team approach. It’s important to ask questions and inform your specialists about the type of EDS you may have so they can make educated decisions about your specific treatment. Not all specialists will be able to help, unfortunately. For example, orthopedic surgeons may choose to not perform surgery because of the chance of failure of the connective tissue to heal properly.
Physical therapy is one treatment option that can help people with EDS manage pain and joint stabilization. Muscle strengthening exercises help to teach a safe range of motion for joint control. Bracing or using supports can aid in the sensory perception of the body in space which makes it easier for muscles to co-contract around a joint. However, taping with KT tape is not recommended for thin and frail skin in a person with EDS. Hands-on therapy like myofascial release and massage can help reduce muscle spasms. For stubborn muscle knots, Dry Needling can be used to deactivate painful trigger points. Overall, a plan can be created for the individual based on their physical health goals.
Understanding the condition is still evolving. A good resource to keep on top of what’s happening in the EDS world, check out Ehlers-Danlos Society’s website at www.ehlers-danlos.org. It’s recommended to work with a provider who has some experience working with clients who have EDS. They have a page where you can search in your area for specialists who may be able to help if you have EDS.